The Caregiver Companion
Transcription
The Caregiver Companion
The Caregiver Companion A User-Friendly Guide to Providing At-Home Care Prepared by Attorneys of BET TZEDEK LEGAL SERVICES The Caregiver Companion A User-Friendly Guide to Providing At-Home Care Bet Tzedek Legal Services is a non-profit, public interest law center which provides free legal services to low-income residents of Los Angeles County. Bet Tzedek means “House of Justice” in Hebrew. Bet Tzedek serves persons of all racial, religious and ethnic backgrounds. Bet Tzedek is an agency of the United Way and of the Jewish Federation of Greater Los Angeles. www.bettzedek.org The Caregiver Companion has been prepared by staff of the Family Caregiver Project at Bet Tzedek Legal Services, a service that protects the legal rights of caregivers and their loved ones. (Bet Tzedek means House of Justice in Hebrew.) Bet Tzedek provides free legal services to lowincome residents of Los Angeles County. Bet Tzedek’s Family Caregiver Project provides legal planning and advice to persons needing home care as well as their families. The project staff represent clients in state court and administrative hearings and make frequent presentations on legal issues concerning caregivers. If you or someone you know would benefit from these services, please contact Bet Tzedek. Here’s how: The Amgen Foundation seeks to advance science education; improve patient access to quality care; and strengthen the communities where Amgen staff members live and work. Since 1991, the Foundation has made more than $85 million in grants to local, regional and national non-profit organizations that impact society in inspiring and innovative ways. It has also supported disaster relief efforts both domestically and internationally. www.amgen.com/citizenship/overview.html Bet Tzedek Legal Services Los Angeles Office 145 South Fairfax Avenue, Suite 200 Los Angeles, CA 90036 (323) 939-0506 San Fernando Valley Office 12821 Victory Boulevard North Hollywood, CA 91606 (818) 769-0136 Online Bet Tzedek Legal Services www.bettzedek.org Bet Tzedek Legal Services ©2007 ABOUT THE AUTHORS Janet Morris Janet Morris has practiced in the area of elderlaw as an attorney with Bet Tzedek Legal Services since 1985. Through her Long Term Caregiver Project, Ms. Morris assists elders and their caregivers with a variety of legal problems. She has also served as a past Director of Bet Tzedek’s Nursing Home Advocacy Project. She has served on numerous statewide committees and as technical advisor to many projects concerning the legal rights of elderly and incapacitated individuals. Janet is currently advising the State of California Alzheimer’s Guidelines Committee on Legal Issues, and serves on the Board of Directors of the Alzheimer’s Association, California Southland Chapter and is an executive board memeber of the California Coalition for Caregivers. She has co-authored numerous articles and publications, and has delivered hundreds of speeches in both English and Spanish. In 2005, Janet received the Caregiver of the Year Award from AARP and KCET for her professional contributions in this area. Kim Williams Kim Williams, a paralegal at Bet Tzedek Legal Services, specializes in providing legal assistance to caregivers and their families. She assists families in navigating the maze of public benefits, helps them plan for long term care services and specializes in maximizing consumers’ In-Home Supportive Services hours. Through legal and legislative advocacy, community partnerships and education, she develops and promotes policies to improve the quality of life and community care options for disabled persons, older adults and caregivers. She is also a frequent lecturer to community and professional organizations. Bet Tzedek Legal Services 145 South Fairfax Avenue Suite 200 Los Angeles, CA 90036 Copyright ©2007 by Bet Tzedek Legal Services All rights reserved. This book is protected by copyright. This book or portions thereof may be reproduced with credit given to the authors and publisher. Printed in the United States of America Last digit indicates print number: 10 9 8 7 6 5 4 3 2 1 Co-authors: Janet R. Morris, JD and Kim E. Williams Contributing Researcher: Stacie Hendrix, JD Developmental Editor: Andy McPhee, HealthEdit Editorial Services The authors and publisher have done everything possible to make this booklet accurate, up to date, and in accord with accepted standards at the time of publication. The authors, editors, and publisher are not responsible for errors or omissions or for consequences from application of the book, and make no warranty, expressed or implied, in regard to the contents of the booklet. Important Note: The Caregiver Companion is based almost exclusively on California law. It is intended for use by California residents, although some aspects may be applicable in other states. This guide is not a substitute for the independent judgment and skills of an attorney or other professional. If you require legal or other expert advice, please consult a competent professional in your geographic area to supplement and verify the information contained in this guide. TABLE OF CONTENTS 1. Caring for a Loved One at Home . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 • • • • Assessing Needs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Home Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Hospice Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Adult Day Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 2. Paying for Home Care Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 • Medicare . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10 i. Eligibility . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10 ii. Medicare Home Care Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11 iii. Medicare Appeals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12 • Medi-Cal . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13 i. Medi-Cal Eligibility . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13 ii. In-Home Supportive Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14 iii. Adult Day Health Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14 iv. Medi-Cal Home and Community based Waivers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14 v. Multipurpose Senior Services Program (MSSP) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15 vi. Medi-Cal Appeals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16 vii. Medi-Cal Estate Claims . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17 • Long Term Care Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17 • Worker’s Compensation Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17 • Veteran’s Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18 3. Financial Strategies to Pay for Home Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21 • Grants and Loans . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22 • Home Equity Loan or Line of Credit . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22 • Reverse Mortgages . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23 • California Property Tax Postponement Program . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23 • Exploring Public Benefits Eligibility . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24 • Selling a Home . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24 • Supplemental Security Income (SSI) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24 • Cash Assistance Program for Immigrants (CAPI) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25 • Veterans Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25 • Handyworker Program. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25 4. How to Find a Home Care Worker . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27 • Home Health Agencies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28 • Home Care Agencies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28 • Private Home Care Workers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29 • Community Registry. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30 • Licensing and Certification . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30 TABLE OF CONTENTS 5. Improving the Quality of Home Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31 • At Home. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32 i. Home Modifications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32 ii. Home Safety Precautions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32 iii. Emergency Alert Response Systems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33 iv. File of Life Card . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33 v. Organizing Documents . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33 vi. Caregiver Education and Training . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33 • Employee Assistance Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34 • Understanding Health Care Professionals. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34 i. Primary Care Physicians . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34 ii. Discharge Planner . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35 iii. Geriatricians . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35 iv. Geriatric Care Managers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36 6. Health Care Decision Making . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39 • Directing Future Healthcare . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40 • Advanced Health Care Directives . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40 • Do Not Resuscitate Orders (DNR). . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42 • Informal Health Care Decision Making . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43 • Conservatorship over the Person . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43 7. Legal and Financial Decision Making . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47 • Durable Power of Attorney for Finances . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 48 • Joint Bank Accounts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49 • Representative Payee . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49 • Money Management. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 50 • Probate . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 50 • Wills . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 51 • Trusts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 52 • Special Needs Trusts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 53 • Conservatorship over the Estate . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 54 8. Resolving Problems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57 • Family Disputes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 58 • Mediation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 59 • Problems with Home Care Providers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 59 • Using the Courts. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 59 TABLE OF CONTENTS 9. Detecting and Reporting Elder Abuse and Neglect . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 61 • Elder and Dependent Adult Abuse . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 62 i. Spotting Abuse and Neglect . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 62 ii. Reporting Abuse and Neglect . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 64 iii. Elder Abuse Temporary Restraining Order . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65 iv. Conservatorships . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65 v. Elder and Dependent Adult Civil Protection Act (EDACPA) . . . . . . . . . . . . . . . . . . . . . . . . 65 • Scams Targeting the Elderly and Dependent Adults . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65 i. Telemarketing Scams . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 66 ii. Home Improvement Scams . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 66 iii. Home Equity Scams. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 66 iv. Estate Planning Scams . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 67 v. Identity Theft . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 67 10. Supporting the Caregiver . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 69 • Family and Friends . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 70 • Support Groups . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 70 • Caregiver Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 71 • Laws and Policies that Help Caregiver . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 72 i. Family and Medical Leave Act. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 72 ii. Paid Family Leave Program . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 72 iii. Tax Deductions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73 iv. California Property Tax Postponement Program . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73 v. Flexible Workplace Policies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73 • Transitions to Other Placement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73 • Placement Options . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73 Appendices . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 77 A Glossary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 78 B MSSP Sites . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 85 C PACE Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 88 D Caregiver Resource Centers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 89 Index. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 91 PREFACE oes this situation sound familiar to you? Your mother’s doctor just called to tell you that she fell and is now hospitalized. The doctor says, “She’ll be able to return home in a few days but she’ll need someone to help her at home with cooking, cleaning, and bathing.” D Your mother needs help at home. What would you do next? How would you arrange for her care? If you’re like most people, you don’t know much about home care. You probably don’t know what types of home care services are available, how to pay for it, or how to ensure the best care possible. This guide can get you started, providing clear and concise answers to these and other questions such as how to: • pay for home care • apply for public benefits • make appropriate health care decisions for yourself and others • protect elders in their homes • thrive as a caregiver The guide is based almost exclusively on California law. Check your own state’s laws if you live elsewhere. In addition, relevant law changes from year to year, so be sure you have the most recent edition of this guide. Always consult local experts to supplement and verify the information contained in this booklet. A glossary is available at Appendix A to clarify unfamiliar terms. Preface CARING FOR A LOVED ONE AT HOME 1 1 CARING FOR A LOVED ONE AT HOME We’re all caregivers at some point. We give care to our children, spouses, friends, and each other. For this book, though, a caregiver is defined as someone who cares for a disabled, ill, or elderly person. The caregiver could be a spouse, relative, friend, or paid professional. Caregivers provide many types of care, including: • assistance with cooking, cleaning, or managing personal or family finances • driving to and from physician or hospital appointments • financial assistance to help pay for medications and home care Some individuals need high levels of medical care, such as receiving injections or being given food through a gastrointestinal tube. Caregivers provide all of these services and many more. Numerous support services exist for individuals needing care in their home. This booklet outlines options to help a loved one stay at home. Let’s begin by breaking down what those needs might be and looking at the various types of care available. times, though, acute illnesses strike unexpectedly, as happens with stroke or heart attack. That’s when family members may need to quickly step into a caregiver role. Acute illnesses may strike unexpectedly. That’s when family members may need to quickly step into a caregiver role. ASSESSING NEEDS Individuals with degenerative illnesses, such as multiple sclerosis and Alzheimer’s disease, may recognize that over time, their physical and emotional needs are destined to grow. In such cases, caregivers are able to slowly increase their level of care over time. At other 1 Caring for a Loved One at Home Assessing a loved one’s needs is the first step in deciding whether home care is appropriate and, if so, what kinds of care are available. Does the loved one need help shopping, housecleaning, or getting into a bathtub 2 HOME CARE safely? Does the person feel lonely or isolated? Does he need constant supervision to prevent wandering, falling, or causing other harm? Caregivers should talk with their loved ones and health care professionals about the kind of help needed. Home care is almost always an option. Many health care services and community resources assist those who choose to be cared for at home. Homecare is almost always an option. COMMUNICATION IS KEY A person can receive the same quality of care, and sometimes better care, at home than in a nursing home. If a doctor recommends nursing home placement, the patient could choose to go home if appropriate care can be arranged. There are generally two choices for someone who needs nursing home-level care but does not wish to go to a nursing home: The person can stay in her own home with assistance from family members or paid care providers, or move in with a family member or friend willing to provide care. Whenever possible, the decision to care for someone at home should result from a continuing conversation between a loved one and family, friends, and health care professionals. As the needs of the loved one change, the involvement of family, friends, and professionals may also change. Home care should allow a person to stay safely at home, remaining as independent as possible for as long as possible. Need time off from work to care for a loved one? Home Care Providers The term home care refers to medical and supportive services provided in an individual’s home. Home health agencies, home care agencies, private home care workers, and hospice care workers all provide home care services. A loved one may need the services of skilled care providers, such as nurses (RNs or LVNs), physical therapists, occupational therapists, speech therapists, or licensed social workers. These providers can generally be found through licensed home health agencies, and their cost may be paid by Medicare, Medi-Cal, long term care insurance or by private payment • Family Medical Leave Act (FMLA): This federal law requires many employers to provide 12 weeks of unpaid leave to a qualified employee needing to care for a new child or an ill family member. • California Paid Family Leave Program: This program gives qualified workers up to 6 weeks of partial pay per year if they need to take time off from work to care for a new child or ill family member. 3 1 Caring for a Loved One at Home Hospice Care Hospice care is designed for people who are terminally ill. If a loved one is terminally ill, the patient’s physician can recommend hospice care services. A doctor’s prescription is needed to obtain services. Hospice care may be provided at home, in a hospital or nursing home. Hospice workers provide comfort care, also called palliative care, to those with a terminal illness. Comfort care consists of pain management and other services that keep the patient comfortable. Hospice care includes the services of home health aides, physicians, nurses, physical therapists, speech therapists, and professional counselors to help the patient and family. Medicare and Medi-Cal each pay for hospice care services. Hospice care for the terminally ill may be provided at home, in a hospital or nursing home. with personal funds. See Chapter 3, “Financial Strategies to Pay for Home Care,” page 22. Non-medical services, such as shopping, housekeeping, cooking, transportation, and supervision, are provided by home care agencies. Those services may be paid by private payment or long-term care insurance. Keep in mind that although home care agencies are not licensed, reputable agencies belong to membership associations and are accredited by peer agencies. Private home care workers, called chore workers, also provide at-home, non-medical care, including housekeeping, cooking, assistance with bathing, and so forth. These individuals may be hired privately or through an agency and may be paid by private payment, Medi-Cal or long term care insurance. 1 Caring for a Loved One at Home ADULT DAY CARE CENTERS Adult day care centers provide care for the elderly and disabled. Many centers provide transportation to and from the center. The loved one may go to an adult day care center every day, a few times a week, or only occasionally, so that the caregiver can have some time off. A participant who attends an adult day care center socializes with others, eats meals, and may even receive medical care. When choosing a day care center, caregivers should make sure that the center is licensed and can accommodate the special needs of 4 • Adult Day Health Care Centers. These centers are licensed, Medi-Cal-certified health care facilities that provide medical, rehabilitative, and social services for physically and mentally impaired individuals. These comprehensive centers are staffed by medical personnel and social workers. Their services are designed to delay or prevent inappropriate nursing home placement. They generally offer hot meals, provide nutritional counseling, administer medications, offer recreational and social activities, and provide transportation to and from the facility. Medi-Cal and the PACE Program pay for services at these centers. the loved one. The center should have safety measures in place to prevent wandering. Many centers allow tours so caregivers can see what participants do there. Some centers allow potential participants to stay an entire day to see if they like the center. Caregivers should talk to people who use the center and listen to what they say are the center’s benefits and drawbacks. The loved one should like the center, and it should be clear that it will meet all the loved one’s needs. There are a number of types of adult day care centers including: • Alzheimer’s Day Care Resource Centers. These centers specialize in programs for persons with Alzheimer’s disease or related dementias. They’re usually equipped to handle people who wander, are incontinent or aggressive. They offer a supervised, structured environment and provide support groups. These centers are usually private pay on a sliding scale. • Adult Day Treatment Centers. These centers care for people with psychological or psychiatric problems. They may accept individuals with dementia. The centers provide social and recreational activities, counseling, and medication management for problem behaviors. Medicare and Medi-Cal may reimburse for these services on a limited basis. • Adult Day Care. These centers are mostly recreational in nature. The participants are supervised and have daily group and social activities. They may accept someone with early dementia but are generally not equipped for the problems of wandering, incontinence, or aggressive behavior. Many local multipurpose senior service centers provide social day care. This type of day care is usually not covered by health insurance, Medicare, or Medi-Cal. Adult Day Care facilities are typically private pay on a sliding scale and are licensed by the Department of Social Services. • Senior Centers. These community centers provide activities, meals, limited health monitoring, transportation, and legal advice to seniors. Senior centers often house adult day care and respite activities and are excellent places to obtain information on a variety of caregiving issues. There is no charge for attending a senior center. 5 1 Caring for a Loved One at Home Case Study Albert and Brenda: What Level of Care is Best? Albert faced a critical issue: Should he put Brenda, his wife of 42 years, in an assisted living facility? Brenda was in the early stages of dementia and could still provide basic care for herself, though it was becoming more difficult. Brenda occasionally became aggressive, which made it hard for Albert to manage her and Albert was exhausted. His friends told him to put his wife in an assisted living facility, but Albert was adamant that he find care for Brenda at home. He just didn’t know what type of care he could or should get. Core Issues How to obtain additional care to keep Brenda at home. Steps to Resolution Albert knew that Brenda needed additional care but didn’t know how to get it. After consulting a geriatric care manager and obtaining information from the local Caregiver Resource Center, he decided to enroll Brenda in an Alzheimer’s Day Care Resource Center. He also hired a home chore worker to help him at home. He was advised to try these two things before deciding to place Brenda in an assisted living facility. Follow-Up Brenda thrived at the Alzheimer’s Day Care Resource Center, where she went 3 days a week. Albert was able to connect with old friends and relax or shop while Brenda was at the center. He also joined an Alzheimer’s support group where he learned about caregiving strategies and resources. When Brenda’s condition worsened, Albert hired a home care worker to attend to Brenda’s needs while she was at home. Key Points • Because Albert was clear in his goals, care managers were better able to quickly focus on how best to meet those goals. • Brenda’s medical team was apprised of the change in her routine. Her primary care physician worked with the Alzheimer’s Day Care Resource Center to monitor and adjust her medications. • Albert was able to care for Brenda at home because some of the stress of full-time caregiving was relieved by different types of respite care including day care, a home chore worker and the support group. 1 Caring for a Loved One at Home 6 Resources For more information on topics in this chapter, consult the following resources. Agencies • AAA Los Angeles (L.A. Department of Aging): (213) 252-4000 or www.lacity.org/doa/doass1.htm • AAA Los Angeles County: (213) 738-4004 • Access Services: (800) 883-1295, www.asila.org, disabled transportation • CalMedicare, Medicare Information for Californians: (800) 434-0222 or www.calmedicare.org • Cityride, Los Angeles Department of Transportation: (Area Code 213, 310, 323, or 818) 808-RIDE (7433) or www.ladottransit.com/other/cityride • List of California Area Agency on Aging (AAA), California Department of Aging: (800) 5102020 or www.aging.state.ca.us/html/local%20aaa/AAA_listing.html • Medi-Cal: (800) 541-5555 or www.medi-cal.ca.gov • National Association of Area Agencies on Aging: (800) 677-1116 (elder care locator hotline outside of California) or www.n4a.org • National Association of Professional Geriatric Care Managers: 1604 North Country Club Road, Tucson, AZ 85716, (520) 881-8008 (main), (520) 325-7925 (fax), www.caremanager.org or www.findacaremanager.org Print resources • And Thou Shalt Honor: The Caregiver’s Companion, Beth Witrogen McLeod, Rodale, 2002 • Hard Questions, Simple Answers: A Workbook to Take the Crisis Out of Caregiving, Elana Peters, MA, Seven Locks Press, 2002 • There’s No Place Like a Nursing Home: 4 Powerful Steps That Will Change Your Life, Karen Shoff, MSW, MSG, Invisible Ink, 2002 7 1 Caring for a Loved One at Home PAYING FOR HOME CARE SERVICES 9 2 PAYING FOR HOME CARE SERVICES MEDICARE This section provides an explanation of Medicare, Medicare HMOs, Medicare eligibility and coverage, and Medicare appeals. Medicare is a federal health insurance program for persons 65 and over and also for people with disabilities. Medicare benefits are divided into three parts: • Part A covers hospitalization, skilled nursing home care, home health care, and hospice care • Part B helps pay for physician visits, rehabilitation therapy, outpatient hospital services, ambulance charges, and durable medical equipment. Medicare usually covers 80% of these charges, and the recipient is responsible for the rest. Medicare does not cover routine physical examinations or custodial care in a nursing home or assisted living facility. • Part D covers prescription drugs. There are premiums, deductibles, and copayments for this program, though some low-income individuals may be eligible for financial assistance. Home care services can cost thousands of dollars each year. Paying for these services can be difficult, especially for those on low or restricted incomes. There are many ways to pay. For instance, government programs, such as Medicare, Medi-Cal, In-Home Supportive Services (IHSS), and Veteran’s benefits, pay for some types of home care services. Some long-term care insurance policies also pay for home care. This chapter examines average costs of care and the many payment options available. AVERAGE COSTS Although residential care facilities or nursing homes can cost between $30,000 and $100,000 a year, caring for a loved one at home typically costs a lot less. The cost, however, is still quite expensive for most families. The cost of home care services depends on the type of services required. For example, extensive nursing or other home health care will cost more than most types of nonmedical services, such as cooking, cleaning or adult day care. In 2007, a chore worker typically costs $8 to $15 per hour. A registered nurse from a home health agency costs $25 or more per hour. Fortunately, there are many programs that pay for various home care services. Eligibility for programs may depend on the person’s medical needs, income, assets, and health insurance. Medicare and Medi-Cal pay for some home care and other medical services. 2 Paying for Home Care Services Medicare does not cover routine physical examinations or custodial care in a nursing home or assisted living facility. Medicare Eligibility Automatic eligibility for Medicare begins as soon as a person turns 65 and becomes eligible for Social Security or Railroad Retirement benefits. An individual can also enroll in Medicare at age 65 if a spouse or former spouse is eligible for Medicare. Individuals of 10 All services are limited to part-time or intermittent care, and the patient must need skilled therapy or nursing care. The patient’s doctor must review the patient’s condition every 60 days to ensure that the patient still needs skilled care. Medicare pays for hospice and end-of-life palliative care if the patient gets a prescription from her doctor stating that she is terminally ill and she specifically elects to receive comfort care instead of curative health care. Some doctors are unaware of this benefit or wait too long to prescribe it. Caregivers should ask the doctor for a hospice care prescription if they think it will be helpful to a loved one. Medicare HMO (Managed Care) any age may be eligible for Medicare if they’ve received Social Security Disability benefits for two years or if they suffer from end-stage renal disease or ALS (Lou Gehrig’s disease). Some Medicare recipients may choose to receive benefits from a Medicare Health Maintenance Organization, or HMO. A Medicare HMO is a centralized plan of healthcare that requires patients to see a doctor within the HMO network. Medicare HMOs usually have lower co-payments for doctor visits and prescription drugs. Some Medicare HMOs such as SCAN Health Plan also offer home care and attendant care services, as well as case management. Medicare HMOs are required to give at least the same health benefits as regular Medicare. Medicare Home Health Services Medicare pays for home health care for people unable to leave their homes and who require skilled care. Skilled care is health care provided by a professional, such as a doctor, nurse, therapist, social worker, or counselor. If a patient’s doctor determines that home health care is medically necessary—for instance, it’s needed to maintain or improve a patient’s health—then Medicare will pay for those services. Most home health care is designed for people requiring physical rehabilitation at home. Medigap (Medicare Supplements) Medigap policies are private health insurance plans designed to supplement Medicare coverage. The policies are regulated 11 2 Paying for Home Care Services receive a Medicare Summary Notice, explaining the reason for an unpaid bill or denial and detailing how to appeal the decision. For individuals who belong to a Medicare HMO, the HMO must explain in writing why it denied or terminated a service or why it refused to pay for a service. The HMO must also explain in writing how to appeal the decision. In either case, follow the appeal process closely. Maintain records of all communications. Follow the appeal process closely. Maintain records of all communications. Medicare Fast-track appeals are designed for people whose health will be seriously injured if they don’t receive the requested medical treatment. Fast-track appeals may also be requested if the patient is receiving services from a skilled nursing facility, home health agency, or outpatient rehabilitation facility. A fast-track appeal decision should be received within 72 hours. If the decision remains unfavorable, it can be appealed again to an independent review organization. Fasttrack appeals are designed for people enrolled in either Medicare or Medicare HMO plans. Fast-track appeals may also be requested for a denial of prescription drug coverage, under Medicare Part D. by the government and pay some or all Medicare co-payments and deductibles. Some Medigap policies also cover prescription drugs and preventive care. Medigap policies may be costly. Medicare Appeals Patients have a right to appeal any Medicare decision, including denials of service or nonpayment of a bill. Individuals covered in the original Medicare plan should 2 Paying for Home Care Services 12 MEDI-CAL 2007, the maximum income (after income deductions) for a single Medi-Cal applicant was $1081 per month. For a married couple who are both applying for Medi-Cal, the maximum income (after income deductions) in 2007 was $1502 per month. Medi-Cal is also available to those with higher incomes if they pay a share of the cost of monthly medical expenses. However, they must still meet the low-asset criteria. Medi-Cal (known as Medicaid in other states) is a health insurance program for people with low income who are 65 or older, blind, or disabled. Medi-Cal benefits pay 100 percent of most medical treatment, hospitalization, skilled nursing care, custodial nursing care, home care, and durable medical equipment. Individuals may receive both Medicare and Medi-Cal. In that case, Medicare becomes the primary health insurance and Medi-Cal the secondary payor, covering all Medicare copayments and deductibles. If a person receives both benefits, private Medigap insurance may not be necessary. Let’s examine Medi-Cal eligibility and the many services it covers. Long Term Care Medi-Cal pays for care in a nursing home. Long Term Care Medi-Cal (LTC Medi-Cal) provides benefits to patients in nursing homes. LTC Medi-Cal eligibility requirements for married persons is more generous than the eligibility requirements for community Medi-Cal. For example, in 2007, the at-home spouse of a nursing home resident may retain up to $101,640 in liquid assets, in addition to the home. The term liquid assets refers to property that can be readily converted to cash. Bank accounts, stocks, and certain investments are examples of liquid assets. California law also allows the at-home spouse to retain a monthly maintenance-needs allowance of $2,541, in 2007, an amount adjusted annually by a cost-of-living increase. Medi-Cal Eligibility Community Medi-Cal is designed to help those who live in the community, either in their homes or in assisted-living or boardand-care facilities. Community Medi-Cal provides health insurance for those with low income or limited resources. To be eligible for Medi-Cal, an individual must be 65 or over, blind, or disabled, and have low income and assets. If an individual receives Supplemental Security Income (SSI), he is automatically enrolled in Medi-Cal. Medi-Cal limits the amount of assets a recipient can have. An individual is limited to $2,000; a couple is limited to $3,000. Be aware that some items aren’t counted, such as the house in which the person lives, a car, and a burial plot. Even individuals who don’t receive SSI may still be eligible for Medi-Cal if the person’s income is near the federal poverty level. In Medi-Cal Home Care Services Medi-Cal pays for more home care services than does Medicare. Like Medicare, MediCal pays for skilled nursing care, home health aides, medical equipment, and physical, speech, and occupational therapy. 13 2 Paying for Home Care Services However, one of the most important benefits of Medi-Cal coverage is that it pays for care that keeps people in the community, such as In-Home Supportive Services (IHSS) and Adult Day Health Care centers. In-Home Supportive Services (IHSS) is a part of the Medi-Cal program, and provides home care to individuals who wish to remain at home but can’t accomplish some daily activities on their own, such as bathing, dressing, toileting, or housecleaning. The program also pays for protective supervision for individuals who suffer from dementia or mental impairments and who need to be watched 24 hours a day, to ensure their safety. Home Care Services Medi-Cal pays for: • Chore workers through In-Home Supportive Services Program (IHSS) • Case management, respite care and home modifications through the Multipurpose Senior Services Program (MSSP) • Day care at an adult day health care center • Nursing care through the home and community-based Medi-Cal waiver programs families. (For more information on hospice care, see Chapter 1, Caring for a Loved One at Home, page 2.) Adult Day Health Care Centers are licensed Medi-Cal certified health facilities that provide medical, rehabilitative, and social services for physically and mentally disabled individuals. These comprehensive centers are staffed by medical personnel and social workers. The centers are designed to delay or prevent inappropriate nursing home placement and often offer basic health care services, such as blood pressure monitoring and medication management, as well as hot meals, nutritional counseling, recreational and social activities, and transportation to and from the facilities. Medi-Cal Home and Community-Based Waiver Programs help people obtain services in the community that might not otherwise be available to them under the regular Medi-Cal Protective supervision is designed for individuals who suffer from dementia or mental impairments and need to be watched 24 hours a day. Before IHSS services can be provided, a professional from the program interviews the eligible person at home and recommends a service plan. This plan grants a specific number of home care hours per month to the eligible person. That number can range anywhere from 1 hour to 283 hours a month, depending on the applicant’s needs. The eligible person then hires a chore worker. The State pays the chore worker, based on the number of hours given. In 2007, the rate in Los Angeles County is $9.00 per hour. The chore worker may be a family member, friend, or paid provider. Hospice Care: Medicare and Medi-Cal pay for hospice care for patients and their 2 Paying for Home Care Services 14 program. These services include shift nursing, attendant care, home modifications, emergency response systems, and case management. Waivers are available to persons who would otherwise require long-term care in a nursing facility (including subacute facilities), an intermediate care facility, or a hospital. Waivers are designed to serve as an alternative to institutional living and a way for patients to stay in their homes with the same supportive services they would receive in an institutional setting. There is a waiting list for some waivers. Waiver eligibility guidelines for married couples are more favorable than those offered by community Medi-Cal. Waiver programs use the same eligibility guidelines as long-term care Medi-Cal. For example, in 2007 the well spouse is allowed to own up to $101,640 in liquid assets and to keep up to $2,541 in monthly income. The ill spouse is eligible for Medi-Cal covered services under the waiver program. To apply, call Medical In-Home Operations (IHO) at (916) 552-9105. The Multi-purpose Senior Services Program (MSSP) provides social and case management for frail, elderly clients. The program is designed for individuals over 65 years old who qualify for a nursing home but want to remain in their home. MSSP arranges for social and health services that help the elder stay at home for as long as possible. MSSP caseworkers monitor elders for signs of abuse and deterioration in health and link them with community services. To be eligible, the individual must: • be 65 or older • live within an MSSP site’s service area • qualify for nursing home care • be currently eligible for Medi-Cal with no share of cost. MSSP services include adult day care, personal care assistance, and case management. MSSPs also offer respite care assistance for caregivers, transportation, meals, social visiting, counseling, and interpretive services. 15 2 Paying for Home Care Services There are more than 40 MSSP sites in California. (See Appendix B, MSSP Sites, page 85.) Married couples are eligible for the MSSP Institutional Deeming Waiver, which uses the Long Term Care Medi-Cal eligibility criteria. For example, in 2007 the well spouse may own up to $101,650 in assets in addition to their home and keep up to $2,541 in monthly income. The ill spouse is eligible for MSSP services, IHSS, and Medi-Cal. The Program of All-Inclusive Care for the Elderly (PACE) provides comprehensive care for elderly individuals who require nursing home care but wish to stay at home. Health care services include physician visits, nursing care, home care, respite care, day care, rehabilitation, and medication management. To be eligible, the person must: • be 55 or older • require full-time nursing home care • live in a PACE program area Medicare and Medi-Cal pay for the program’s benefits. PACE, a pilot program, currently has four sites located in East Los Angeles, Oakland, Sacramento, and San Francisco areas. (See Appendix C, PACE Programs, page 88.) MEDI-CAL APPEALS To request a State Hearing, call the State Hearing Office toll-free at (800) 9525253. Or you can put your request in writing and mail it to: Appeals & State Hearings P.O. Box 18890 Los Angeles, CA 90018-0890 For legal assistance with Medi-Cal hearings, call the Health Consumer Center at (800) 896-3203 or visit www.healthconsumer.org Hearing must be filed before the deadline printed on the notice. The state contact number and address are listed on the notice. When asking for a hearing, it’s important that the person’s name, address, telephone number, and Medi-Cal number be included, and also a statement about why they want the hearing. If Medi-Cal reduces, changes, or terminates benefits, the person can stop the reduction or termination by asking for a hearing with Aid Paid Pending. One must ask for Aid Paid Pending before the effective date of the reduction or termination. After the person asks for Aid Paid Pending, benefits will continue until the problem is resolved or a judge issues a decision. At the hearing, individuals may speak for themselves or be represented by a lawyer, friend, or another person. Free legal assistance may be obtained by contacting a local legal aid organization. The toll-free number for Public Inquiry and Response, included on the Medi-Cal Appeals Individuals who don’t agree with a Medi-Cal decision, such as a denial or reduction of benefits, have the right to appeal. When MediCal makes a negative decision, it is required to send a letter called a Notice of Action. The Notice of Action explains appeal rights including important deadlines. After a person receives the Notice of Action, a Request for 2 Paying for Home Care Services 16 heirs show that collection of the claim would cause a substantial hardship to them. There are only a few ways to avoid a MediCal estate claim against a home. The law pertaining to Medi-Cal estate claims is complicated and changes frequently. People concerned about such claims should seek the assistance of a knowledgeable elder-law attorney. LONG TERM CARE INSURANCE Long Term Care (LTC) insurance policies are designed to pay for home care, nursing home care, or care in an assisted living facility. Like any insurance policy, the covered individual pays a monthly premium. Levels of coverage vary from plan to plan. Some plans cover home care services in addition to nursing home costs; others do not. LTC insurance policies can be expensive and must be purchased before any illness occurs. When considering purchasing such a policy, one should check to ensure that the policy covers home care and that its benefits are adjusted to cover rising inflation. In addition, they should seek information from California’s Department of Insurance and the California Partnership for Long Term Care on how to choose the best policy. Some employers offer LTC insurance policies to their employees, dependents, and even parents. Check with the employee assistance program about these policies. Notice of Action letter, may also be used to find free legal assistance. Local senior centers can also assist in presenting a case. Medi-Cal Estate Claims Medi-Cal does not consider a person’s home as a resource when it determines eligibility. That means if the individual resides in or intends to return home in the future, MediCal can’t put a lien or make a claim against the home. However, after the person’s death, Medi-Cal will file a claim against the estate to collect monies paid by Medi-Cal. Medi-Cal can’t make a claim against an estate if there is a living spouse, minor child, or disabled child. Furthermore, Medi-Cal may give up an estate claim if the person’s WORKER’S COMPENSATION The Worker’s Compensation Insurance program provides medical insurance and 17 2 Paying for Home Care Services disability benefits for people who are injured on the job. If a claim is approved, Worker’s Compensation will pay some home health care, as long as it’s prescribed by a physician. the Aid and Attendance and Homebound programs, veterans or their spouses who need home care may receive a stipend to pay for personal care services at home or in a nursing home. The veteran or spouse must provide a doctor’s letter certifying the need for care and must also meet certain low-income and asset criteria. Contact the Department of Veterans Affairs to apply. VETERAN’S BENEFITS Benefits are available for veterans who served in the military for 90 days or more, including one day during a time of war. Under Case Study Jim and Sue: Avoiding Nursing Home Placement Sue is exhausted because she cares for her husband Jim 24 hours a day. Jim and Sue had just celebrated their 40th wedding anniversary when he was diagnosed with Parkinson’s disease. Since then, his health has quickly deteriorated. Jim now needs help feeding himself, toileting, and performing most of his daily activities. Sue wants to care for Jim at home. Jim and Sue are in their mid-70s. They worked hard all their lives and have saved $70,000 for their retirement. They receive $2200 a month from Social Security. Jim’s medical expenses are high, and the couple spends over half their monthly income, about $1500 per month, on his medical expenses and home care. They are quickly spending their retirement savings. Core Issues How to help Jim stay at home without spending all the couple’s retirement savings and find Sue extra help at home so she can stay healthy and continue to care for Jim. Steps to Resolution Sue called Bet Tzedek Legal Services for help. Jim applied for In-Home Supportive Services (IHSS), a Medi-Cal program that pays for home care services. However, he was denied because the couple had saved too much money. Sue wanted to find a program that would help Jim receive the care he needed at home, instead of in a nursing home. Sue knew that she could place Jim in a nursing home and that Long-Term Care Medi-Cal would pay for his care, but she adamantly refused. She wanted to keep him at home. A Bet Tzedek counselor suggested that Jim apply for the MSSP Institutional Deeming Waiver. This program would provide a case manager to assist Sue in ordering medical 2 Paying for Home Care Services 18 supplies, provide emotional support, and arrange for a visiting nurse to monitor Jim’s condition. Based on the couple’s income and savings, they were eligible for the MSSP program without any monthly cost to them. (The MSSP institutional deeming waiver uses the same eligibility requirements as Long-Term Care Medi-Cal which allows the well spouse to keep $2,541 per month in income and $101,640 in assets.) After Jim was enrolled in the MSSP program, he would be automatically eligible for Community MediCal and In-Home Supportive Services. Follow-Up Jim applied for the MSSP Institutional Deeming Waiver. Bet Tzedek helped him and Sue complete the lengthy application. In 6 weeks, Jim was approved for the program. Jennifer, the MSSP case manager, now visits Jim and Sue every month to check on Jim’s condition to see if he or Sue needs anything. The IHSS program gives Jim 120 hours of home care services a month, and Medi-Cal pays for 3 days a week of adult day health care. Now Sue is able to take breaks from caregiving to go to her support group, visit friends, and take care of her own needs. Key Points • Medi-Cal pays for home care benefits. • Alternatives to nursing homes exist. Medi-Cal has programs that offer elderly and disabled persons supportive services so that they can stay at home and receive the care they need. These programs include the Medi-Cal Waiver programs, IHSS, and the MSSP program. • Be persistent in finding help. If one person says no, look for someone who says yes! 19 2 Paying for Home Care Services Resources For more information on topics in this chapter, consult the following resources. Agencies • California Department of Insurance: 300 South Spring Street, South Tower, Los Angeles 90013; (800) 927-HELP (4357); www.insurance.ca.gov • California Partnership for Long-Term Care (CPTLC): California Department of Health Services, Mail Stop 4100, P.O. Box 997413, Sacramento 95899-7413, (916) 552-8990, www.dhs.ca.gov/mcs/cpltc • Department of Veterans Affairs: (800) 827-1000; www.va.gov • Elder Law Attorney Referrals: California Advocates for Nursing Home Reform (CANHR), (800) 474-1116, www.canhr.org; National Academy of Elder Law Attorneys, (520) 8814005, www.naela.org • Health Consumer Alliance: (800) 896-3203, www.healthconsumer.org • Health Insurance Counseling Program (HICAP): (800) 834-0222, www.healthcarerights.org • In Home Supportive Services (IHSS): (888) 944-4477 • Medi-Cal Waiver Program: In Home Operations, Department of Health Services, P.O. Box 997419, MS 4502, Sacramento 95899-7419; (916) 552-9105 • Medicare: (800) 633-4227, www.medicare.gov • National PACE Association: 801 North Fairfax Street, #309, Alexandria, VA 22314, (703) 535-1565, www.npaonline.org • SCAN Health Plan: (877) 452-5898, www.scanhealthplan.com • Senior Legal Hotline: (800) 222-1753, www.seniorlegalhotline.org Online resources • Medicare booklet on home health care benefits: www.medicare.gov/Publications/Pubs/pdf/10969.pdf • 2006 version of California Partnership for Long-Term Care Comprehensive Brochure that discusses LTC insurance and is published by CPTLC: www.dhs.ca.gov/mcs/cpltc/PDF/Brochures/2006ComprehensiveBrochure.pdf 2 Paying for Home Care Services 20 FINANCIAL STRATEGIES TO PAY FOR HOME CARE 21 3 FINANCIAL STRATEGIES TO PAY FOR HOME CARE on other special programs to help pay for day care and home care in your town. HOME EQUITY LOAN OR LINE OF CREDIT Sometimes Medicare, Medi-Cal, Long Term Care insurance, Workers’ Compensation, and Veteran’s benefits aren’t enough to pay for all of a loved one’s home care. Additional funds may still be needed. Here are a few tools and ideas for finding and raising money to pay for home care and home modifications. When someone purchases a home, he or she usually takes out a mortgage to help finance the purchase. The difference between the amount the person owes and the amount the home is worth (its value on the market) is called the equity. After equity has built up in a home, lenders may offer additional loans against the home that allows the owners to draw a lump sum of money based on the equity. The lump sum is then paid back in monthly installments. These kinds of loans are called home equity loans. Borrowing against equity can prove useful for homeowners who want to make home improvements or pay costly medical bills. On the other hand, home equity loans can be more expensive than they’re worth. Home equity loans have fees similar to first-mortgage fees, in which the amount borrowed is based on equity and monthly income. Lenders offer varying interest rates for home equity loans, so shopping around makes sense to find the best deal. REDUCING YOUR EXPENSES Some families choose to pay for home care privately, using retirement savings or working two jobs. To save money and reduce a loved one’s expenses, families may enroll in their utility company’s reduced rates programs for seniors or disabled persons. Local colleges may offer cosmetic or basic health care services by students at a reduced rate. Local senior centers and Area Agency on Aging (AAAs) have information on programs such as food banks, free medications, home delivered meals, and handyman services. GRANTS AND LOANS Some community organizations, such as local chapters of Cancer Care, the Alzheimer’s Association and the Los Angeles Caregiver Resource Center, provide funding to help pay for home care services. Sometimes these agencies offer one-time grants to help pay for daycare, home care, or respite care. The Jewish Free Loan Association assists persons of all faiths by offering interest-free loans for medical and home care expenses. The local AAA office will have information 3 Financial Strategies to Pay for Home Care Borrowing against equity can prove useful for homeowners who want to make home improvements or pay for costly home care. Home equity lines of credit are also loans, but usually instead of one lump payment, you are able to take out smaller amounts 22 over time. Home equity lines of credit are treated like a separate account and allow the borrower to either write checks or use a credit card to access the loan. They are also paid back in monthly installments. If you receive SSI or Medi-Cal, consult with a legal aid agency before you sign paperwork for a home equity loan as the loan may affect your benefits. REVERSE MORTGAGES A reverse mortgage uses equity from the home to pay the borrower a lump sum or monthly amount. In a reverse mortgage, the borrower must be over 62 years old and have paid off or almost paid off his or her home mortgage. The loan needn’t be paid back as long as the borrower lives in the home. If the home is sold, the borrower then pays back the loan with proceeds from the sale. If the borrower dies while living in the home, the estate repays the loan. Money received from a lender can usually be used for any purpose. Reverse mortgages are more expensive than other types of loans because the initial fees are higher and the loan interest builds up over time. Individuals interested in obtaining a reverse mortgage should make sure to shop around and to borrow only from trustworthy sources. If a person receives Supplemental Security Income (SSI) or Medi-Cal, income from a reverse mortgage may affect benefits. Consult an attorney or a legal aid agency before signing any paperwork for a reverse mortgage. CALIFORNIA PROPERTY TAX POSTPONEMENT PROGRAM Reverse mortgages are more expensive than other types of loans because the initial fees are higher and the loan interest builds up over time. California Property Tax Postponement Program allows individuals to postpone paying some or all of their property taxes 23 3 Financial Strategies to Pay for Home Care an elder law attorney for advice about how to best spend down money and assets to qualify for Medi-Cal benefits. Individuals may be disqualified from receiving Medi-Cal benefits for awhile if they give money as gifts or give away assets to meet the asset qualifications under Medi-Cal. The relevant law is complicated; no one should give money or property as gifts without first consulting an elder law attorney. SELLING A HOME Many older adults have paid off their mortgages and own their homes free and clear. Selling a home or downsizing to a smaller house or condominium may make sense so that the money left over can be used to pay for home care expenses or assistedliving or retirement communities. Some people consider selling their homes if they intend to move in with their children. Selling a home may be an appropriate way to convert an asset into cash, and have enough money to pay for home care. Anyone considering whether to sell a home should consult an elder law attorney. Selling a home may have tax consequences and will affect Medi-Cal, Supplemental Security Income (SSI), and other government benefits. until they move, sell the home, or die. To be eligible, a borrower must be at least 62 years old, blind or disabled, and have an income less than $24,000 per year. The person must own and occupy the property as their principal residence. This can be an effective way of reducing living expenses. The State Controller’s office handles all claims for property tax postponement. To learn more about property tax postponement or to find appropriate application forms, contact the California State Controller at (800) 952-5661 or call the local tax collector’s office. SUPPLEMENTAL SECURITY INCOME (SSI) Supplemental Security Income (SSI) is a federal Social Security program that gives additional income to seniors and disabled people who live below the poverty line. In 2007, if a single individual’s income is less EXPLORING PUBLIC BENEFITS ELIGIBILITY Even if a loved one doesn’t qualify for Medi-Cal, individuals may want to consult 3 Financial Strategies to Pay for Home Care 24 (HISA) grants offer money to construct housing or adapt current housing to meet the needs of disabled veterans. Grants are limited to veterans who need the improvements or alterations to gain access to their homes or critical areas within their homes such as bathrooms. Grant amounts depend on the veteran’s disability and whether or not the disability is due to a service-connected injury. The VA also offers home care benefits through the Aid and Attendance program and pension benefits to veterans who served on active duty for at least 90 days including one day during wartime. Veterans must have been other than dishonorably discharged, disabled or aged 65 or older, and be low income. Contact the VA at (800) 827-1000 for more information on these benefits. than $856 per month, SSI will supplement their income to bring it up to that amount. A married couple is eligible if their combined income is below $1,501. The rates increase every year. There are also resource (asset) limits in this program. A single individual can have no more than $2,000 in assets and a couple can have no more than $3,000 in assets. A house, car, and burial insurance policies are not counted toward resource limits. People who are accepted for SSI benefits are automatically eligible for and enrolled in Medi-Cal. An application may be obtained at a local Social Security office or by calling (800) 772-1213. CAPI The Cash Assistance Program for Immigrants (CAPI) is a state program that provides cash assistance to aged, blind, or disabled immigrants who have legal resident status. Qualified immigrants are eligible if they meet income and resource requirements. CAPI is designed for immigrants who were or would be on SSI except for the federal citizenship requirement. Homebound applicants can receive information and application by calling the Department of Public Social Services (DPSS) Central HELP Line at (877) 481-1044. HANDYWORKER PROGRAM The Handyworker Program provides free minor repairs to the homes of persons over 62 years old or disabled individuals who can’t afford to make repairs on their own. The service is fully funded by the City of Los Angeles Department of Housing. Individuals must own and live in their own homes within the City of Los Angeles or within limited parts of Los Angeles County. The repairs may include painting, installation of wheelchair ramps, debris removal, installation of windows and door locks, and other repairs as approved. Check with your city or Area Agency on Aging to see if they have a similar program. VETERANS BENEFITS The Department of Veterans Affairs offers several programs to help veterans pay for living expenses or home care and provide housing access for disabled vets. The Home Improvement and Structural Alterations 25 3 Financial Strategies to Pay for Home Care Resources For more information on topics in this chapter, consult the following resources. Agencies • AARP’s Reverse Mortgage program: (800) 209-8085 • Cancer Care: (800) 813-4673, www.cancercare.org • Elder Law Attorney Referrals: California Advocates for Nursing Home Reform (CANHR), (800) 474-1116, www.canhr.org; National Academy of Elder Law Attorneys, (520) 881-4005, www.naela.org • Handyworker program, City of Los Angeles: (213) 808-8803 or (213) 808-8974 (Spanish) • Jewish Free Loan Association: (323) 761-8830, www.jfla.org • Los Angeles Caregiver Resource Center: 3715 McClintock Avenue, Los Angeles, CA 90089-0191; (800) 540-4442; http://geroweb.usc.edu/lacrc • Meals on Wheels: www.mowaa.org Online resources • AARP’s Reverse Mortgage Website: www.aarp.org/revmort • Area Agency on Aging: www.n4a.org • National Center for Home Equity Conversion: www.reverse.org • Property Tax Postponement Website: www.sco.ca.gov/col/taxinfo • Federal Trade Commission: www.ftc.gov for information about reverse mortgages 3 Financial Strategies to Pay for Home Care 26 HOW TO FIND A HOME CARE WORKER 27 4 HOW TO FIND A HOME CARE WORKER When a decision has been made to keep a loved one at home, finding a home care worker can be a challenge. Some people use an agency to hire a home care worker. Others find the worker themselves. HIRING THROUGH AGENCIES There are two kinds of home health care agencies: home health agencies and home care agencies. They vary significantly in the kinds of services they supply. Both types of agencies act as the employer of the home care worker and pay taxes, insurance, and workers’ compensation for their employees. Home Health Agencies services may include assistance with shopping, housekeeping, cooking, selfadministered medications, transportation, ambulation, bathing, personal hygiene, and supervision. Home care agencies are not licensed by the state. They recruit, train, and supervise workers and are responsible for the quality of the care their employees provide. Home care agencies place a provider in the home for an hourly fee. These agencies should complete a criminal screening for each worker. The workers may be bonded. The term bonding refers to a kind of insurance policy that compensates for theft or loss caused by the worker. The hourly rates range from $10.00 to $16.00 per hour (sometimes more), depending on the skill of the worker and the Home health agencies provide skilled medical providers, including nurses (RNs and LVNs), occupational therapists, physical therapists, and other medical personnel. Skilled medical care includes administering oral medications, injecting medications, and changing bandages or catheters, among many other skills. Because the providers are highly skilled, the agency must be licensed by California’s Department of Health Services. Payments for services provided by home health agencies may be covered by Medicare, Medi-Cal, or LTC insurance. Home Care Agencies In contrast, home care agencies provide non-medical service providers, such as homemakers and chore workers. Their 4 How to Find a Home Care Worker 28 services required. Services provided by a home care agency are usually paid for privately or covered by Long Term Care insurance. TIPS FOR HIRING PRIVATE HOME CARE WORKERS Choosing an Agency • Give yourself time to find a qualified individual. Review their experience level, talk to references, and discuss your loved one’s particular needs with the worker. Make sure to discuss all of the home care needs and whether the worker is willing and able to help with them. When choosing a home health agency or home care agency, caregivers and patients may call their local Area Agency on Aging (AAA) or a Regional Center for people with developmental disabilities for referrals. In addition, the family physician, a discharge planner, friends and relatives may provide referrals to respected agencies. • Ask friends or relatives if they can recommend a reliable individual. Churches, synagogues, and Independent Living Centers are good places to advertise for home care workers. Contact the local Area Agency on Aging and ask for referrals. PRIVATE HOME CARE WORKERS Instead of hiring a worker through an agency, home care workers can be hired privately. Private home care workers advertise their services through community registries, newspapers, senior centers, and AAAs, and are independent from government or corporate oversight. Individuals who hire private workers become the employer and therefore must follow all state and federal labor laws, tax laws, and insurance laws such as workers’ compensation. Some homeowner’s insurance policies cover private home care workers in case of injury. People who hire private workers should consult an accountant about withholding taxes for the home care worker. • Contact the Department of Nursing or Gerontology at your local college to see if they have a list of students who want to work as home care workers. Local senior centers and community registries also carry listings of people looking for work as a home care worker. • Carefully screen all applicants. Remember that home care workers have access to your loved one’s home, personal information, and possessions. Individuals who hire private workers become the employer and therefore must follow all state and federal labor laws, tax laws, and insurance laws. 29 4 How to Find a Home Care Worker LICENSING AND CERTIFICATION Community Registries A community registry can be used to locate private home care workers. A community registry is a list of private home care workers looking for employment. For-profit and nonprofit agencies might also offer registry listings. Community registries are not licensed and may or may not have conducted background checks or trained their workers. Caregivers should remember to ask the registry if its workers are required to complete criminal background checks or health care training. If a caregiver or patient decides to hire a care worker through a registry, they become the employer and must follow all state and federal labor laws, tax laws, and insurance laws. Contact the local AAA for lists of registries. Before hiring any agency or individual, caregivers should thoroughly check the agency’s or individual’s credentials. For home health agencies or a certified home health aide, the Department of Health Services can determine whether the agency’s or individual’s license or certification is current and if there are any complaints on file. If the agency or individual doesn’t need a license, potential employers can still research credentials, such as educational degrees or certificates, and check peer and client references and membership in health or home care associations. The local Better Business Bureau can help determine whether there have been complaints against an agency or registry. Resources For more information on topics in this chapter, consult the following resources. Agencies • Department of Health Services, licensing division: (916) 445-4171, www.dhs.ca.gov/cvl • Los Angeles area senior services: www.la4seniors.com (available in six languages) • Los Angeles Area Agency on Aging: (213) 252-4000 • Eldercare Locator: (800) 677-1116, www.eldercare.gov 4 How to Find a Home Care Worker 30 IMPROVING THE QUALITY OF HOME CARE 31 5 IMPROVING THE QUALITY OF HOME CARE Home Secure The Home Secure program offers free home assessment and home modifications to lowincome seniors and disabled individuals living in the City of Los Angeles. The program is offered to homeowners and tenants. Home Secure will assess a home and then modify it to make it safer. They will install grab bars, shower hoses, locks, smoke alarms, nightlights, and other hardware. Case managers and other elder care professionals may also perform home assessments to ensure that a loved one’s home is as safe as possible. This chapter examines what caregivers and patients need to know to improve the quality of home care, including steps to take at home, understanding the various members of the health care team, what community resources are available, and determining whether a home care agency or private home care workers make the most sense. AT HOME Modifying a home to make it safe, making sure important information is readily at hand, managing money, getting the right training, and knowing how to obtain needed services—these are all essential tasks for ensuring a high quality of home care. Home safety precautions Home safety precautions are critical for persons who wander. Sometimes persons with dementia may get lost or wander into unsafe environments. Individuals who have dementia should be enrolled in the Alzheimer’s Association Safe Return Program, a nationwide identification system designed to assist in the safe return of people who become lost when wandering. Home Modifications Home modifications can make a loved one’s home safe and free from obstacles. Here are some tips for making sure a home is safe. • Check the home for slippery floor surfaces, clutter, and other safety hazards. Home safety precautions are critical for persons who wander. • Make sure the home is equipped with the necessary number of smoke detectors and that they’re located in the proper locations for that particular home. To keep home exits secure, deadbolt or slide-bolt locks should be installed on exterior doors, to limit access to potentially dangerous areas. Alarms that ring when the door opens should be installed on exterior doors. Let neighbors know when a loved one is at risk for wandering. • Install a sufficient number of fire extinguishers, and make sure that they’re handy. • Install night lights and grab bars in the bathrooms. 5 Improving the Quality of Home Care 32 Information and Referral Services California’s Caregiver Resource Centers, Area Agency on Aging (AAAs), senior centers, and community mental health centers all offer toll-free numbers to obtain referrals to community resources. Emergency Alert Response Systems An emergency alert response system, such as Lifeline, can be critical in an emergency. These alert systems offer individuals and caregivers a fast, easy way to call for help. Lifeline, for instance, offers a pendant with a button that, when pressed, alerts Lifeline responders, who can then call an ambulance. The File of Life card, shown here, can save valuable seconds in an emergency. The local AAA has information on how to obtain a File of Life card. Or visit www.folife.org Organizing Documents Collecting and organizing important health care and financial documents can ensure that a loved one or caregiver can find critical information when needed. Keep a folder with the names and contact information for a loved one’s doctors, attorney, financial advisor, and nearby family and friends, as well as personal information, such as the Social Security number, driver’s license number, and insurance information. File of Life Card The File of Life Card lists important medical information about a loved one for quick reference in case of emergency. The card, kept in a red plastic sleeve labeled File of Life, lists the patient’s name, emergency medical contact, insurance policy, Social Security number, health problems, medications and their dosages, allergies, recent surgery, religion, and advance directive. The card is kept in a sleeve which attaches to the front of the refrigerator. (A wallet card is also available.) Emergency medical personnel have been trained to look for this form. The card’s visibility and readability ensure that they can find pertinent health information quickly when responding to a call, especially if the patient is confused, frightened, or unable to offer assistance or a clear history. Caregiver Education and Training Education and training of the caregiver is essential to keep a loved one healthy and also to prevent injuries. Caregivers should consult with their loved one’s doctors, nurses, and therapists for instruction on medical care pertinent to his condition. Caregiver support groups also provide training and support. See Chapter 10, Supporting the Caregiver, page 70. 33 5 Improving the Quality of Home Care KEEP A FILE OF IMPORTANT DOCUMENTS, SUCH AS: Primary Care Physicians Primary care physicians play an important role in caregiving. They’re responsible for monitoring their patients’ health and making sure they’re receiving the proper amount and level of care. It is important that caregivers and patients communicate with their doctor as often as necessary, especially to report changes in a loved one’s condition. The doctor may be a physician specializing in internal medicine, geriatrics, cardiology, or family practice, and should be someone with experience handling the loved one’s disability or illness. • advance directives • powers of attorney • marriage, birth, and death certificates • wills • medical insurance benefits as well as all other insurance documents • financial accounts • property ownership documents. Primary care physicians are responsible for monitoring their patients’ health and making sure they’re receiving the proper amount and level of care. Employee Assistance Programs Employee assistance programs (EAPs) are offered by some workplaces to assist their employees who are caregivers or patients. Types of assistance vary widely and may include counseling for personal issues. Some retirement programs offer assistance for retirees who need at-home care. The human resources department can determine whether a patient or caregiver qualifies for EAP benefits. Patients admitted to a hospital and who wish to return home should clearly express those wishes to the primary care physician. The doctor and his staff may not be familiar with all types of in-home care, community services, and public benefits available for home care patients. This booklet may be used to help educate the physician about available home care options and to help him complete a home care plan. If the doctor believes a patient lacks the support needed to stay at home, a decision may be made to discharge the patient to a nursing home. If the doctor decides not to allow a patient to return home, the patient still has the right to return home against the UNDERSTANDING HEALTH CARE PROFESSIONALS To obtain the highest quality of care, caregivers and patients should understand the role each professional plays in the health care system. 5 Improving the Quality of Home Care 34 and can set up in-home care services, rehabilitative care, or outpatient services. Discussions with the hospital discharge planner generally start as soon as a patient enters a hospital. Doing so ensures that discharge planning is completed by the time the loved one is discharged. The loved one should be involved in the discharge process as much as possible. Discharge planners will be able to answer questions about the various types of services available and their quality and cost. The patient or caregiver should tell the discharge planner whether they wish to return home or go to a nursing home, so that proper arrangements can be made. Geriatricians Geriatricians are doctors who specialize in the medical needs of older adults, just as pediatricians specialize in the medical needs of children. Geriatricians are experts in dealing with multiple medical problems and chronic illnesses. They focus on gaining optimal quality of life and functional ability for their patients. Geriatricians typically use a holistic approach that addresses the physical, psychological, and social needs of the patient and family. They work closely with other health care professionals and organizations, as well as the patient and family, and treat the family as key members of the health care team. Geriatricians also scrutinize the often large number of medications that older adults take, to ensure that the medications are appropriate and are not causing serious side effects. Older adults are often treated by a doctor’s advice. In such cases, patients are required to sign an Against Medical Advice form. This form acknowledges that the patient has decided to be discharged even though she has been told that doing so may cause mental or physical harm. Discharge Planners A discharge planner is a professional employed by a hospital to aid in the transition phase from hospital care to other types of medical care. The discharge planner can arrange admittance to a nursing home 35 5 Improving the Quality of Home Care Specialists may prescribe medications to treat certain disorders but may not be fully aware of medications prescribed by other specialists. The geriatrician will also assess the patient for pain and mood disorders, such as depression and chronic pain, which are common among older adults. The geriatrician may perform a full geriatric assessment on new patients. A geriatric assessment is a comprehensive evaluation performed by a multidisciplinary team. The assessment team may consist of specialist physicians, social workers, physical therapists, occupational therapists, dieticians, psychologists, pharmacists, and geriatric nurse practitioners. The team creates a care plan designed to optimize an older person’s ability to enjoy good health, improve overall quality of life, reduce the need for hospitalization or institutionalization, and enable the individual to live independently for as long as possible. The care plan identifies problems and makes specific recommendations for improving the loved one’s condition. Patients or caregivers can request a geriatric assessment from the primary care physician or geriatrician. In addition, many larger hospitals, university health centers, and VA medical centers have geriatric assessment units. variety of specialists, such as cardiologists, endocrinologists, gastroenterologists, and others. These specialists may prescribe medications to treat certain disorders but may not be fully aware of medications prescribed by other specialists. A geriatrician can evaluate all medications and determine, as a whole, how they interact. Many times, medications can be adjusted with significant improvements in the patient’s well-being. 5 Improving the Quality of Home Care Geriatric Care Managers Care managers typically have a background in counseling, social work, or a related health care field. A care manager assesses the loved one’s needs and works with the caregiver to 36 create, implement, and monitor a care plan designed to meet those needs. Care managers may provide conflict resolution for family caregivers and intervene in a crisis. Care managers can be hired privately. They generally charge anywhere from $30 to $150 per hour. A person on Medi-Cal may ask for a care manager through the Multi-Purpose Senior Services Program (MSSP) or PACE program. The Integrated Care Management Program (ICMP) also provides care managers for elderly or disabled persons at no cost to help them through times of crisis. Contact the local AAA for information. Free and low-cost care management may be found through hospitals, senior centers, mental health programs, home health agencies, and social service agencies, such as Jewish Family Services, Catholic Charities, and Adult Protective Services. In addition, some Medicare HMOs offer care management services. Care management may be especially helpful when family members live far from the patient needing care. Care managers should be independent and objective. Before hiring a care manager, caregivers should ensure that they fully understand the care manager’s fees including whether there is a charge for phone calls. Find out whether the care manager seems knowledgeable about the loved one’s particular condition and physical and emotional needs. WHEN CHOOSING A CARE MANAGER, IT IS IMPORTANT THAT THE PERSON: • can provide creative planning and assessment • can intercede in emergencies • will listen and respond well to the loved one’s and caregiver’s concerns • be familiar with the services the loved one needs. Research Studies Research studies are essential to improving knowledge and understanding about medical conditions such as Alzheimer’s disease and other dementias. People volunteer to participate in research studies for many different reasons including the opportunity to gain early access to new treatments, to access expert medical care for the condition studied and to help others by contributing to medical research. Before agreeing to participate in a study it is important that a person fully understand the potential benefits and risks. Research studies are often conducted at universities and medical schools, but there are also private companies that conduct research. To find out about local research studies, visit The U.S. National Institutes of Health website at www.clinicaltrials.gov. Care managers should be independent and objective. 37 5 Improving the Quality of Home Care Resources For more information on topics in this chapter, consult the following resources. Agencies • AAA Information Services Hotline: (800) 510-2020 • Alzheimer’s Association Safe Return Program: (888) 572-8566 or www.alz.org/safereturn • American Geriatrics Society (AGS) Physician Referral Service: aids in locating physicians experienced in caring for older adults; participating physicians are members of AGS and are board-certified in internal medicine or family practice; (800) 563-4916, www.healthinaging.org/public_education/physician_referral.php • Eldercare Locator: (800) 677-1116 or www.eldercare.gov • Home Secure Program: (818) 762-5892 or (323) 937-5855 • Home Secure Program: www.homemods.org • National Association for Home Care: www.nahc.org. • National Association of Professional Geriatric Care Managers, 1604 North Country Club Road, Tucson, AZ 85716, (520) 881-8008 • Senior Care Network Resource Center: (800) 664-4664 • Southern California 211 line: Dial 211 in Southern California for referrals to community resources including health care services, emergency housing and free meals Print resources • The Portable Caregiver: 8 Essential Guidebooks for Elder Care, Mary Trabert and Deborah Morris, www.portablecaregiver.com/products.asp • Eldercare at Home: A Step-by-Step Resource for Caring for an Older Person at Home, AGS Foundation for Health and Aging, www.healthinaging.org • Smoke Detectors Save Lives: www.fire.ca.gov/php/education_homeowner.php • The Eldercare Handbook, Stella Mora Henry, R.N., Collins. 2006. Online • WebMD Physician Directory: http://doctor.webmd.com/physician_finder Other • Lifeline: (800) 380-3111, www.lifelinesys.com 5 Improving the Quality of Home Care 38 HEALTH CARE DECISION MAKING 39 6 HEALTH CARE DECISION MAKING 3. A Do Not Resuscitate order allows an individual to specify that he does not wish to receive emergency resuscitative measures, such as cardiopulmonary resuscitation (CPR). The first two forms are collectively called advanced health care directives, because they allow individuals to express their wishes at present for the level of health care they want in the future. The third allows the individual to refuse medical care. Let’s take a look at these methods. Every adult has the right to make decisions about his or her own health care. That includes the right to authorize or refuse medical treatment. Problems may arise, however, when someone becomes suddenly incapacitated due to a stroke, accident, dementia, or another condition. A person is considered incapacitated if she lacks the mental functioning to understand her condition, to understand the options for treatment and their consequences, and to make an informed decision about medical care. No one knows when or if they’ll become incapacitated, so it’s important for people to plan for it—just in case—by making sure that their wishes are known and will be followed in case they’re unable to speak for themselves. This chapter explains how to do just that. Advanced health care directives allow individuals to express their wishes at present for the level of health care they want in the future. Advanced Health Care Directives In California, any adult of sound mind can create a California Power of Attorney for Health Care and a Health Care Instruction. These documents are generally combined into one, easy-to-follow form called an Advanced Health Care Directive. The combined document allows individuals to appoint a trusted relative or friend to act as agent and speak on their behalf if they become incapacitated. In such cases, the agent is allowed to make all health care decisions. As the legal representative, the agent is the only person other than the patient who can legally authorize medical treatment. An agent can also refuse medical treatment, including life support, nutrition, and hydration. Some forms also allow individuals to express wishes about organ donation and funeral arrangements. DIRECTING FUTURE HEALTH CARE In California, there are three legal ways for people to express their wishes about future medical care: 1. A Power of Attorney for Health Care allows an individual to appoint an agent to make health care decisions on his behalf if he becomes incapacitated. 2. A Health Care Instruction allows an individual to list specific instructions about his future health care, such as whether he wants life support, a feeding tube, or other medical treatments. 6 Health Care Decision Making 40 Appointing an Agent In the Power of Attorney for Health Care form, an individual can appoint an agent to make health care decisions for her. The agent may be a family member, friend, or another person. Individuals should make sure to select someone they feel comfortable with, someone they can trust to listen to their wishes and exercise them appropriately. An agent should be someone the patient can talk to in-depth about her wishes for future health care, especially about whether she wants to accept or refuse certain life-sustaining measures. The agent cannot be an individual’s health care provider or an owner or employee of a residential care facility. One or two alternate agents may be selected, in case the primary agent is unable or unwilling to act. Giving Your Agent Specific Health Care Instructions Although an agent is authorized to accept or refuse medical treatment on an individual’s behalf, some decisions agents face can be extremely difficult. The optional Health Care Instruction section of the Advanced Health Care Directive allows individuals to document specific instructions about lifesupport measures, end-of-life care, or any other type of treatment. In that section, individuals can instruct their agents and medical providers to allow life-support treatments, such as being placed on a ventilator or being given artificial nutrition and hydration through a feeding tube. They can also specify that they don’t want those types of treatments, or even that they want one but not the other. DO-IT-YOURSELF ADVANCED HEALTH CARE DIRECTIVES Individuals do not need to consult an attorney to create an advanced health care directive. Bet Tzedek and other organizations have created easy-to-follow forms that individuals can complete on their own. If the person’s desires are reasonably straightforward, this form is generally adequate. For more complex desires, an attorney should be consulted. For do-it-yourself advanced health care directives, contact Bet Tzedek Legal Services at (323) 939-0506 or visit www.bettzedek.org 41 6 Health Care Decision Making In addition to written instructions, individuals should talk about their desires with their agent and their doctor. Discussing health care decisions now, while the individual is able to explain his wishes, can give the agent a greater sense of comfort about making difficult decisions later. original. The documents may also be registered with the California Secretary of State by calling (916) 653-3984. Health Care Instruction Only A Health Care Instruction allows individuals to make their wishes known directly to their physician if they don’t have an agent or if their agent dies before them. Health Care Instructions describe what type of health care the individual wants including whether to withhold or withdraw care. A physician or hospital is obligated to following the individual’s wishes as written in the Health Care Instruction form. Individuals who have an Advanced Health Care Directive should prepare a wallet card that lists the telephone number of the agent and keep the card with them at all times. Under California law, a copy of an advanced directive or DNR order is just as valid as the original. Do Not Resuscitate (DNR) Orders A DNR order instructs health care providers to withhold CPR or other lifesaving measures if the individual’s heart or breathing stops. The individual or his agent can sign a DNR order in a hospital or nursing home. For persons who live at home and who do not wish to be resuscitated, an Emergency Do Not Resuscitate (EDNR) form is required. This form indicates that the individual doesn’t want paramedics or other emergency medical services (EMS) personnel to revive him if his heart or breathing stops. Individuals who sign an EDNR form should wear a special Medic Alert bracelet. Under California law an EDNR order must also be signed by the treating physician. The form is available from the California Medical Association and does not need to be witnessed or notarized. A family member or in-home care provider must show the approved EDNR or the Medic Alert bracelet to EMS personnel when they arrive. Completing the Forms In California, an advance directive must be signed, dated and witnessed. The individual signing the document must be legally competent to understand the document. Two witnesses or a notary must witness the signing. The witnesses cannot be a family member, the appointed agent, a health care provider, or an owner or employee of a residential care facility. If the individual lives in the nursing home, the long term care ombudsman must be one of the witnesses. After a person has completed an advanced health care directive, copies of the forms should be distributed to family members, the agent, doctors, and hospital. Under California law, a copy is just as valid as the 6 Health Care Decision Making 42 When the Forms Take Effect A family member or friend can ask, or petition, a court to be allowed to make particular health care decisions for the patient or to act as the patient’s conservator. Under California law, an Advanced Health Care Directive takes effect when a person becomes incapacitated. The primary care physician decides when an individual has lost the capacity to make health care decisions, unless the person’s document states otherwise. Individuals who want their agent to assume immediate authority for making all health care decisions should write on the form that the Advanced Health Care Directive be effective immediately, rather than when the person loses capacity. The DNR and EDNR forms are binding as soon as they’re completed. The California Advanced Health Care Directive and EDNR forms have no expiration date. They can be revoked at any time as long as the individual retains the mental capacity to make those decisions. Signing a new form usually revokes a prior document. Conservatorship If a person lacks capacity to make health care decisions and is unlikely to regain capacity in the near future, a family member, friend, or professional conservator may petition a court for conservatorship over the person. Conservatorship is a process in which a judge appoints a person (the conservator) to make all legal, financial, or health care decisions for another person (the conservatee). A conservatorship over the person allows the conservator to manage a person’s personal care, such as where the person lives, and health care decisions including whether to provide or withdraw life-sustaining measures. This type of conservatorship is necessary when individuals can no longer understand their illness or treatment choices. Anyone may petition a court for a conservatorship. A doctor must determine that the conservatee lacks the capacity to make informed decisions about her medical condition and personal care. A petition for conservatorship over the person generally must explain why a loved one lacks capacity, the reasons for a conservatorship, and the areas the conservatorship covers. A family member or friend desiring a conservatorship should consult an attorney. Some courts may have self-help clinics to assist people without an attorney. A conservatorship of the estate, on the other hand, allows a conservator to manage all financial and legal matters for a person. INFORMAL HEALTH CARE DECISION MAKING According to California law, if there is no legally appointed agent, the nearest relative of an incapacitated person may make health care decisions for that person. Under the law, however, the relative has no formal authority to make those decisions. As a result, health care providers are often reluctant to accept the health care decisions of the nearest relative unless the appropriate treatment is obvious or the entire family agrees with the decision. Patients in a hospital can verbally appoint a surrogate to make decisions for them but only for medical decisions during the hospital stay. 43 6 Health Care Decision Making Depending on the person’s needs, a court may appoint a conservator of the person, estate, or both. agent, decide who will make decisions for them, and tell the agent what types of decisions to make, such as whether to provide artificial life-support. In short, the patient is in control. For individuals who have never completed powers of attorney for health care and then become incapacitated, a conservatorship may be necessary. In a conservatorship, the judge appoints a conservator and decides what types of decisions the conservator can make. The conservator may possess less knowledge about the patient’s personal values and desires than they would if the patient had discussed his wishes in advance and completed an Advanced Health Care Directive. Conservatorships are costly and take more than two months to complete, although an emergency temporary conservatorship can be completed within days. Who Can be a Conservator Sometimes it can be difficult to locate a friend or relative who is able and willing to serve as a conservator. If an individual needs a conservatorship but has no one willing to petition the court, the Office of the Public Guardian can act as conservator for an incapacitated person. There are also private professional conservators who can petition the court and act as conservator. The Public Guardian and private professional conservators charge fees for their services. Conservatorships vs. Advanced Health Care Directives Individuals who complete powers of attorney for health care can select their own 6 Health Care Decision Making 44 Resources For more information on topics in this chapter, consult the following resources. Agencies • Bet Tzedek Legal Services: (323) 939-0506, www.bettzedek.org/ • California Medical Association (for EDNR form and a special Medic Alert bracelet): (800) 882-1-CMA (262), www.cmanet.org/ • National Academy of Elder Law Attorneys (NAELA): 1604 North Country Club Road, Tucson, AZ 85716, (520) 881-4005, www.naela.com/ • Office of the Public Guardian of Los Angeles: (213) 974-0515 • Professional Fiduciary Association of California: (866) 886-7322, www.pfac-pro.org Print Resources • Your Way: a helpful guide for discussing and choosing future health care, Healthcare and Elder Law Programs Corporation (HELP) of Torrance, CA, (310) 533-1996, www.help4srs.org • California Probate Code Section 4600 and following. 45 6 Health Care Decision Making LEGAL AND FINANCIAL DECISION MAKING 47 7 LEGAL AND FINANCIAL DECISION MAKING THINGS TO CONSIDER The type of legal planning you need depends on your financial situation, and personal goals, as well as the involvement of your family and other loved ones. When deciding which types of legal and financial planning you need, review your finances. Ask yourself these questions: Estate planning often seems daunting and complicated. But good planning can prevent problems and confusion later. This chapter outlines key financial and legal tools available when planning for what’s expected to happen and, maybe more important, what’s unexpected, including sudden illnesses, accidents, or mental incapacity. All adults have the right to manage their own finances and make decisions about how to spend their money. Problems may arise, however, when someone becomes incapacitated due to a stroke, an accident, dementia, or another condition. A person is considered incapacitated if he is unable to manage his own personal care, property, or finances and lacks the ability to understand his actions when making a decision. Planning for financial well-being in case loved ones become unable to care for themselves should begin sooner rather than later. Let’s look at the various options to consider, including Durable Power of Attorney for Finances, joint bank accounts, representative payee, wills, and trusts. • Who would handle your finances if you became incapacitated? • Does anyone have the authority to write checks for you? • Who do you want to receive property or money from you when you die? • What kinds of funeral and burial arrangements do you want? Remember to discuss these arrangements with your loved ones. used to pay bills, manage bank accounts, or handle other legal and financial matters. With a durable power of attorney for finances, all property remains under the principal’s ownership. However, the agent may act on the principal’s behalf. The document may be used for a particular purpose, such as paying bills only, or for general financial management. The agent may have access to bank accounts, stocks, retirement accounts, and even the deed to the home. Durable Power of Attorney for Finances A person of sound mind may complete a Durable Power of Attorney for Finances. This document allows an individual, the principal, to appoint a trusted relative or friend to be an agent. The agent can manage finances immediately or at some future time. A durable power of attorney for finances is generally 7 Legal and Financial Decision Making With a durable power of attorney for finances, all property remains under the principal’s ownership. 48 Persons considering durable power of attorney for finances should choose an agent who is trustworthy, capable and knows them well enough to be able to make decisions according to their wishes. The agent has a fiduciary duty and, as such, is responsible for using the utmost care in handling the money for the principal and must act in that person’s best interest. Note that there is no court oversight to ensure that the agent acts responsibly or to prevent an abuse of power. A durable power of attorney for finances may take effect immediately or go into effect only if the principal becomes incapacitated. Individuals who want a durable power of attorney for finances to take effect only if they become incapacitated should create what’s called a springing power of attorney for finances. A durable power of attorney for finances may be revoked at any time. The principal may revoke it by completing a revocation of power of attorney form. This form must be notarized. The completed revocation form should be given to the prior agent as well as the principal’s financial institutions. If the individual has real property, he may choose to record the revocation with the local county recorder’s office. A power of attorney for finances is automatically terminated upon death. Although an attorney isn’t needed to complete a power of attorney for finances document, individuals may wish to consult an attorney to ensure that the form is valid and meets all of their needs. CAUTION: Although durable powers of attorney are effective planning tools, many seniors have lost their their life saving to unscrupulous agents. Choose your agent carefully. Joint Bank Accounts People who add a friend or family member as a joint account holder to a bank account should be aware that they’re giving an ownership interest to the joint account holder. Joint account holders have full ownership rights in the account and can use the money for themselves. Also, any liabilities or judgments of the joint account holder could be taken from the account. Individuals who don’t want to give an ownership interest in a bank account but do want to give a family member access to the account could fill out a power of attorney card at the bank. This card grants the family member access to the account and requires them to use the money for meeting the main account holder’s needs. Representative Payee A Representative Payee is a person authorized to manage Social Security and Supplemental Security Income (SSI) payments. Having a representative payee can be especially helpful for people who struggle with keeping track of monthly checks or taking care of other business at the Social Security office. A family member, an agent, or a healthcare provider can ask to be a representative payee 49 7 Legal and Financial Decision Making ESTATE PLANNING directly at the Social Security office. A physician must verify the person’s incapacity, and then Social Security will issue the payment to the representative payee. The representative payee must use the money for the recipient’s care. Like Social Security, the Department of Veterans Affairs (VA) allows representative payees to receive payments for an incapacitated veteran. The law provides a system for distributing an estate when someone dies. The term estate means all personal property, real estate, money, stocks, and any other property owned by a person at the time of death. If a deceased person didn’t leave a will or trust, the estate passes through something called “intestate succession.” In the intestate (pronounced in-TES-tayt) succession process, a court distributes the estate to the deceased person’s next of kin in accordance with that state’s inheritance laws. In California, the estate would go first to a surviving spouse or registered domestic partner, and then to any surviving children or other next of kin. If there are no living relatives and no will or trust, the estate would go to the State of California. Social Security and the VA allow representative payees for incapacitated adults to receive payments. Money Management Money management programs are important for elders and dependent adults who need help managing bills and being protected from financial abuse. Money management programs offer representative payee and bill-paying services. There are also free money management programs for low-income elders and dependent adults. Senior center professionals, social workers from Adult Protective Services (APS), as well as AARP’s money management program can help locate money managers. In addition, a money manager can be hired at an hourly rate. Contact the American Association of Daily Money Managers for help in finding one. Caregivers and patients should make sure to check the person’s credentials through the local Better Business Bureau and to ask for, and then contact, their references. Thoroughly review and discuss their fees before agreeing to any services. 7 Legal and Financial Decision Making Probate Probate is a court process in which a person’s will is reviewed for its validity, creditors are paid, and the balance of assets are distributed to heirs. Although probate is often talked about as a lengthy and burdensome process, it does serve to protect the interests of the deceased individual. This process ensures the will is actually carried out according to the wishes of the deceased. If a person dies without a will, a probate process ensures that the estate is distributed to the next of kin according to state law. In California, an estate worth less than $100,000 can be settled quickly and with little paperwork. 50 In California, an estate worth less than $100,000 can be settled quickly and with little paperwork. Wills A will is a legally binding document that tells others how to distribute an estate when a person dies. A will may also name a person, called an executor, to oversee the distribution of property and follow other directions in the will. Instructions for burial may also be included in a will. Even for persons with few assets, a will can be crucial. For example, wills can relay a deceased person’s desire to give certain items of personal property, often with sentimental value, to chosen family members. Naming an executor allows the person to settle the estate more quickly, because the executor will have legal authority to take control of all property and accounts. Writing a Will In California, there are three basic types of wills: • handwritten will (also called a holographic will) individuals to make specific gifts of their house, cars, and money, and then designate one or more persons to receive the balance of the estate. People with large estates or who wish to exclude certain family members from inheritance, should consider creating an attorney-drafted will. An attorney can help draft a will that will stand up in court should someone want to dispute or contest the will. In addition, an attorney can write a will that can • statutory will • individual attorney-drafted will. A handwritten will is a will that has been written entirely by hand, dated and signed by the person making the will, called the testator, but not signed by witnesses. Individuals with few assets may consider a California Statutory Will. A California Statutory Will is a simple form that allows 51 7 Legal and Financial Decision Making court may refuse to accept the will as valid. California law requires that a typewritten or printed will be signed by the person making the will and by two witnesses. The witnesses should not be people who would benefit from the will. A handwritten (or holographic) will doesn’t need witnesses, but it must be signed and dated. A will may be changed by adding an amendment or codicil. A will may also be revoked by writing a new will. Wills are legal documents and must be executed properly. Property Not Covered by a Will or Probate Some forms of property ownership are not distributed by a will. Joint tenancies, life insurance proceeds, and accounts with payable on death beneficiaries are all examples of property distributed outside of the probate process. Some kinds of trusts also skip the probate process. Trusts A trust is a legal entity that holds property. The trustee manages the trust property for a beneficiary. The trustee has a duty to the trust and beneficiaries to make good business decisions and protect the trust assets for the beneficiaries. A trust may be created while a person is still living or through a will. The trust document states how the trust should be managed and how or when income and principal from the trust should be given to the beneficiary. There can be more than one trustee and more than one beneficiary. do things a statutory will can’t, such as create a trust or appoint more than one executor. People who feel pressure from anyone about whom to include in a will, should contact an attorney to help them create the will that fulfills their wishes exactly as they want. Wills are legal documents and must be executed properly. Otherwise, a California 7 Legal and Financial Decision Making 52 substantial assets because those assets aren’t taxed as extensively when the grantor dies. This type of trust also avoids probate. A testamentary trust is a trust created through a will. It is often used when the grantor doesn’t want the hassle of managing a trust while still living but wants to create a trust for minor children or just to have more control over the distribution of assets. For example, the trust document could specify that the beneficiary receive income only for certain purposes such as an education. There are four basic types of trusts: • revocable living trust • irrevocable living trust • testamentary trust • special needs trust A revocable living trust is a legal document created by an individual (the grantor) to hold and manage property for the beneficiary. This trust can be revoked or changed at any time as long as the grantor still has the mental capacity to do so. Assets placed in the trust are owned by the trust and managed by the trustee. The trustee may be the grantor, a family member, or an organization such as a bank. The grantor may name a successor trustee to manage the trust should the original trustee become incapacitated. A living trust also avoids probate. Trust assets are distributed to the beneficiaries, according to the terms of the trust. Distribution of assets through a trust is less costly and less time consuming than probate. Special Needs Trusts A person who receives government benefits such as SSI, can have very limited assets by law. A special needs trust (SNT) holds assets for the beneficiary so they still qualify for benefits. The SNT is designed to pay for things that Medi-Cal or SSI can’t pay for, such as entertainment, travel, education, and certain medical expenses. In a SNT, the trustee has complete control over the distribution of trust income, and the beneficiary has no control. Because of the complicated nature of all trusts, individuals wishing to create one should consult an attorney with specialized knowledge of trusts. Note that trusts MAY NOT protect assets from Medi-Cal recovery claims. Assets placed in the trust are owned by the trust and managed by the trustee. An irrevocable living trust is similar to a revocable trust except that after it has been created, an irrevocable trust can’t be changed or revoked by the grantor. Irrevocable living trusts are often used for people with Individuals wishing to develop a special needs trust should consult an attorney to avoid losing government benefits. 53 7 Legal and Financial Decision Making Conservatorship over the Estate conservatee and must act responsibly and in the conservatee’s best interest. A court oversees a conservatorship of the estate to ensure that the conservator acts properly. The court will generally require the conservator of the estate to be bonded. Any family member or friend desiring a conservatorship should consult an attorney. Some courts may have self-help clinics to assist people without an attorney. When no planning has been carried out and a person lacks the capacity to make financial and legal decisions, a conservatorship may be necessary. Conservatorship is a probate court process in which a judge appoints a person, the conservator, to make decisions for the incapacitated person, called the conservatee. Depending on a person’s needs, a court may appoint a conservator of the person, the estate, or both. A conservatorship is necessary when a person can no longer handle personal or financial affairs due to mental or physical incapacity. A family member, friend, private professional, or public guardian may act as a conservator. A physician must determine that the conservatee lacks the capacity to make informed decisions. A petition for conservatorship must explain why a loved one lacks capacity, the reasons for needing a conservatorship, and the areas that the conservatorship should cover. The conservator has a fiduciary duty to the 7 Legal and Financial Decision Making How Conservatorships over the Estate Differ from Powers of Attorney for Finances In powers of attorney for finances, an individual chooses her agent, decides who will make decisions for her, and tells the agent what types of decisions to make. She’s in control. In a conservatorship, the judge chooses the conservator and decides what types of decisions the conservator can make. Ultimately, the conservator is in control and is required to act in the best interest of the conservatee. 54 Case Study Esther and Frank: The Importance of Legal Planning Esther and Frank have been married for five years. It is the second marriage for both. Frank is hospitalized from a recent stroke and can’t talk or write. He has bank accounts and stock accounts in his own name. His pension check is direct deposited to one of his bank accounts. Frank is coming home and needs additional care. Core Issues How Esther can gain access to Frank’s income and assets so that she can pay for Frank’s bills and care. Steps to Resolution Esther sought help at her local senior center, which referred her to an elder law attorney. The elder law attorney interviewed Esther about her and Frank’s income, property, previous estate planning, and care needs now and in the future. Because Frank didn’t have a power of attorney, trust, or advance directive, the attorney advised Esther to petition the court for conservatorship. Follow-Up The court made Esther the conservator over Frank’s person and estate because Frank was totally incapacitated and could not make decisions or provide care for himself. Using the conservatorship, Esther could access Frank’s bank account, so she could pay for his care, and to make medical decisions for him. The elder law attorney also did an estate plan for Esther and put her bank accounts and property in a trust. He also created a will and powers of attorney for health care and finances. Esther appointed her daughter as successor trustee and agent. This way, her daughter would not have access to her assets now, but could immediately take over should Esther become incapacitated. Key Points • Because Frank never completed a trust, advance directive or power of attorney while he was well, Esther was forced to go to court to take over Frank’s finances. • Esther took the opportunity to do some estate planning for herself and appointed her daughter as her agent in case of her own incapacity. 55 7 Legal and Financial Decision Making Resources For more information on topics in this chapter, consult the following resources. Agencies • American Association of Daily Money Managers: (703) 496-2913, www.aadmm.com • American Association of Retired Persons (AARP): Provides legal advice on wills and other estate planning documents, (888) 687-2277, www.aarp.org • Bet Tzedek Legal Services: (323) 939-0506, www.bettzedek.org • California Advocates for Nursing Home Reform Lawyer Referral Service: (800) 474-1116, www.canhr.org • National Academy of Elder Law Attorneys (NAELA): (520) 881-4005, www.naela.org • Office of the Public Guardian of Los Angeles: (213) 974-0515 • Professional Fiduciary Association of California: (866) 886-7322, www.pfac-pro.org • State Bar of California: Offers consumer pamphlets, including ones on wills, trusts, and estate planning, (415) 538-2000 or the Senior Information Hotline at (888) 460-7364, www.calbar.ca.gov • California Probate Code Sections n Probate: PC§1800 and following n Trusts: PC§15000 and following n Wills: PC§6100 and following n Powers of Attorney: PC§4000 and following n Conservatorship: PC§1800 and following n Small Estates: PC§13100 7 Legal and Financial Decision Making 56 RESOLVING PROBLEMS 57 8 RESOLVING PROBLEMS Caregiving situations may be fraught with emotions, and disputes are bound to arise. This chapter looks at some of the more common issues that may arise while caring for a loved one, including family problems and problems with home care providers. FAMILY DISPUTES Despite a family’s best intentions, caring for a loved one can be an emotional task. Families should try to unite to provide the best possible care for their loved one. Families should try to unite to provide the best possible care for their loved ones. One way to avoid problems is to call a family conference to discuss caregiving duties and roles. Sometimes developing clear-cut family roles can help everyone know what they should do for the loved one. Having a specific role can provide order and structure to what outwardly seems chaotic. No one should accept a caregiving role unwillingly. Individuals who accept the role of caregiver should feel free to request significant help from family members inside and outside the household. Family conferences may also prove helpful in sorting out the expectations of each family member. Family conferences are also a good way to make long term plans for a loved one, share information and feelings, and plan 8 Resolving Problems emergency or vacation backup for the primary caregiver. Family conferences may prove helpful in sorting out the expectations of each family member. Family meetings can be awkward, especially for people who haven’t talked easily or openly about family matters. Talking about feelings or the need for help is difficult for many people. Caregivers who think a family conference might be difficult should consider inviting a neutral third party to facilitate the family conference. This person could be a social worker, therapist, 58 working together, without hard feelings. Contact the local bar association to find a mediator. Also, many city attorney offices offer free mediation services. Caregivers should make sure to ask whether they have expertise in caregiving disputes. clergy, care manager or a friend. Community senior centers and Caregiver Resource Centers offer a wide array of services, including care managers, to help families resolve problems involving a loved one’s care. If possible, all members of the family should be invited to family conferences. Family members who can’t attend a family conference should be updated through e-mail or phone calls. Sometimes it takes time for family members to accept the deteriorating health of a loved one. Having a family conference can go a long way toward avoiding disputes and getting help for the primary caregiver. Problems with Home Care Providers Families entering into a home care service agreement should review the service provider’s contract and grievance policy. If problems arise with a care worker, it’s important that the employer provides a reliable grievance policy that will help them handle concerns quickly and responsibly. If a problem arises, notify the employer and begin following the grievance policy. Persons who hire a private homecare worker may be required to fulfill certain contractual and legal obligations, such as providing notice for termination of the employee and paying worker’s compensation insurance. If the issue is one of abuse or neglect, remove the person immediately and notify Adult Protective Services. (See Chapter 9, page 62, for more information on Detecting Elder Abuse and Neglect.) Mediation When families can’t reach agreement through family conferences, they may turn to outside help. Sometimes problems arise when family members disagree about basic decisions concerning a loved one’s care. For instance, a family disagrees about where Mom should live or how her finances should be used for her care. Mediation, a type of informal problem resolution, may prove helpful in such situations. Mediation involves the family meeting with a trained mediator. The meetings are confidential and are designed to resolve differences rather than place blame on one side or another. Mediation is unlike going to court and is relatively inexpensive. This form of problem solving is ideal for most family caregiving issues because it encourages positive and collective decision making and is designed to help keep the family USING THE COURTS If problems with a hired worker can’t be resolved, or, in extreme cases, a family can’t resolve a dispute, a lawsuit may be the best option. If the amount of money or damages in question is under $5,000, individuals can file a claim in a small claims court and represent themselves. 59 8 Resolving Problems expensive and time consuming. A case resolved in the court system is binding and enforceable. However, legal representation may be needed in the following instances: • to enforce a contract • if a care agency employee has injured a loved one or caregiver Litigation is a lengthy court process in which judges and juries make decisions under state law. • if someone else is suing the caregiver or family County bar associations, as well as the State Bar of California, offer lawyer referral services. Legal aid organizations provide free legal services for persons of low income. Consult the local legal aid organization in the phone book or contact the local bar association for more guidance. • if financial or physical elder abuse occurs The attorney will guide the individuals involved through litigation, a lengthy court process in which judges and juries make decisions under state law. Litigation can be Resources For more information on topics in this chapter, consult the following resources. Agencies • Bet Tzedek Legal Services: 145 South Fairfax Avenue, Suite 200, Los Angeles, (323) 9390506; 12821 Victory Boulevard, North Hollywood, (818) 769-0136; www.bettzedek.org • California Advocates for Nursing Home Reform (CANHR): (800) 474-1116; www.canhr.org • California Courts Self-Help Centers: www.courtinfo.ca.gov/selfhelp • Los Angeles County Bar Association Dispute Resolution Service: 261 South Figueroa, Suite 310, Los Angeles, (213) 896-6533 • National Academy of Elder Law Attorneys (NAELA): (520) 881-4005; www.naela.org • Office of the City Attorney Dispute Resolution Program: 222 South Hill Street, Suite 600, Los Angeles, (213) 485-8324; [email protected] • LA Caregiver Resource Center: (800) 540-4442; http://geroweb.usc.edu/lacrc 8 Resolving Problems 60 DETECTING AND REPORTING ELDER ABUSE AND NEGLECT 61 9 DETECTING AND REPORTING ELDER ABUSE AND NEGLECT • emotional abuse • neglect • self-neglect Elder and dependent adult abuse is a growing problem. It is critical that caregivers, their loved ones, and their family members learn how to detect elder and dependent adult abuse, so that problems can be quickly identified and reported and then handled appropriately. This chapter discusses physical and emotional abuse, as well as various types of financial abuse that rob seniors and dependent adults of money and other possessions. • financial exploitation. Physical abuse includes physical and sexual assault, unreasonable physical restraint, prolonged deprivation of food and water (unrelated to end-of-life health care decisions) and the use of unauthorized or inappropriate medication to subdue or alter a person’s emotional state. Emotional abuse includes verbal abuse, infliction of emotional distress, isolation, confinement, or refusal of emotional support. Neglect includes failure to help an elder or dependent adult with hygiene, to provide shelter and clothing, medical care or food and water, and to protect the elder or dependent adult from safety hazards. Self-neglect includes the inability to care for oneself. The signs are lack of food, vermin infestation, lack of hygiene and general self disregard. Self-neglect may be a warning sign that the elder needs more help in the home. Warning signs of physical abuse and neglect may include: • unkempt or dirty physical appearance ELDER AND DEPENDENT ADULT ABUSE Under California law, elder and dependent adult abuse is a crime and can lead to both criminal and civil penalties. Elders and dependent adults receive added protection under the law because of the unique vulnerability of the two populations. The law provides for increased civil and criminal penalties if the victim is an elder or dependent adult. An elder is someone aged 65 or older. A dependent adult is any person aged 18 to 64 whose physical or mental limitations restrict their ability to protect their rights or to perform regular daily activities. • matted hair • unexplained injuries like sores or bruises • burn marks Spotting Abuse and Neglect • malnutrition The term elder and dependent adult abuse covers: • physical abuse 9 Detecting and Reporting Elder Abuse and Neglect • marks on the body in the shape of an object. 62 Another clear warning sign of any type of abuse is isolation. Be wary of situations in which elders or dependent adults are kept isolated from family and friends, particularly if they aren’t allowed out of the presence of a particular caregiver or family member. The elder or dependent adult should be allowed to speak freely and have as much independence as possible. Be wary of situations in which elders or dependent adults are kept isolated from family and friends. While the indicators above don’t necessarily mean that the elder or dependent adult has been abused, any of the signs should be fully investigated. If the explanations of the caregiver, family member, or service provider aren’t adequate and there is a suspicion that the loved one is being abused or neglected, it should be reported immediately to Adult Protective Services. Financial abuse includes any type of theft or embezzlement of money or property from the elder or dependent adult. Types of financial abuse can range from the theft of small amounts of cash to tricking the elder or dependent adult into transferring property to another person. Signs of financial abuse are similar to signs of emotional abuse and include the abused adult’s acting withdrawn, confused, forgetful, angry, depressed, or isolated. Other signs of financial abuse include: • unusual bank account activity Signs of emotional abuse include the person’s acting: • withdrawn • confused • depressed • angry • frightened • checks signed by the elder or dependent adult who later can’t remember having signed them • secretive 63 9 Detecting and Reporting Elder Abuse and Neglect report the abuse to APS. Individuals reporting abuse are protected from criminal and civil liability, and the reporter’s name is kept confidential. It is also possible to report anonymously. • purchases that the person doesn’t want or need • lack of clean clothes or adequate food • new friend who consumes much of the person’s attention and offers to manage money and assets. Every county in California has an APS office responsible for investigating allegations of abuse and arranging for appropriate services for the elder or dependent adult. IMMEDIATE DANGER: CALL 911 The Department of Aging, Long Term Care Ombudsman is responsible for investigating abuse that occurs in a long-term care facility, such as a nursing home, assisted living facility, board-and-care home, or similar residential facility for elders or dependent adults. Ombudsman services are free and confidential. The California Attorney General’s office has a task force designed to combat and prevent elder abuse. The task force specializes in dealing with financial abuse and abuse in nursing homes and other facilities. Reporting Abuse and Neglect Individuals who think a loved one is in immediate danger should call 911. After the loved one is safe, other options for help should be considered. If abuse is suspected but the loved one isn’t in immediate danger, the abuse should be reported to Adult Protective Services, local law enforcement, or the State Attorney General. Adult Protective Services (APS), part of the California Department of Social Services, was formed to help protect elders and dependent adults from abuse in private homes, hotels, hospitals, and health clinics. Every county in California has an APS office responsible for investigating allegations of abuse and arranging for appropriate services for the elder or dependent adult. Services include: investigating elder abuse reports, arranging for temporary shelter, providing counseling and referral services and consulting with other professionals. Individuals who suspect that a loved one, neighbor, or friend is being abused, should 9 Detecting and Reporting Elder Abuse and Neglect Elder Abuse Mandatory Reporting State law requires that certain individuals report suspected abuse to the appropriate agency. Mandatory reporters include doctors, nurses, social workers, and other health care professionals, clergy (with some exceptions), employees of health care facilities, bank employees, and anyone who assumes the care or custody of an elder or dependent adult. 64 Using the Courts to Protect Elders order. For more information, visit the California Superior Court’s website at www.courtinfo.ca.gov/selfhelp/protection/ elder.htm. Sometimes an elder or dependent adult needs the added protection of a court, usually in the form of a temporary restraining order or conservatorship. In addition, California law provides that an abused elder or dependent adult can sue the abuser for civil damages. Let’s examine each of these protective resources. Conservatorships Conservatorships offer another way to receive court protection. A court will appoint a conservator for a person who cannot care for himself and needs protection from an abusive situation. Once a conservatorship is in place, the conservator is responsible for protecting the loved one from abuse, including physical, emotional, and financial abuse. Elder Abuse Temporary Restraining Orders Temporary Restraining Orders (TROs) are court orders that temporarily require an abusive person to stay away from the elder or dependent adult, or else face arrest. An elder or dependent adult can ask a judge for an Elder Abuse TRO for physical abuse, neglect, abandonment, isolation, kidnapping, refusal of services, or the infliction of emotional pain. The elder or dependent adult can ask for a TRO, as can the person’s conservator or court-appointed guardian. After a hearing, the judge can be asked to make the TRO permanent. If it becomes permanent, it will stay in effect for three years. Although a TRO is a legal protection that police and sheriff’s officers must enforce, it isn’t a guarantee the abuser will stay away. In some instances, the TRO may anger the abuser and escalate the situation. Applying for a TRO should be considered very carefully. To file a TRO, go to a courthouse in your county and fill out forms EA-100 and EA-120. The court clerk will make copies and provide instructions on how to file the completed forms, obtain a hearing and get a restraining Elder Abuse Civil Protection Act The Elder and Dependent Adult Civil Protection Act (EDACPA) is a California state law that allows elders, dependent adults, and their conservators to sue abusers for damages. Abusers can be sued for physical and emotional abuse or neglect or for financial abuse. The law provides for damages plus reasonable attorney’s fees and costs. The law also provides for pain and suffering damages even after the elder’s or dependent adult’s death. This helps prevent abusers from escaping liability. Consult an experienced attorney to file an elder abuse case. The State Bar of California has an attorney referral service for such purposes. Scams Targeting the Elderly Financial abusers can be family members, caregivers, or complete strangers. There are several prevalent schemes that target elders and dependent adults for financial fraud and theft of property or money, including 65 9 Detecting and Reporting Elder Abuse and Neglect Take down the name and address of the company or charity and ask someone to send written materials about the offer or request. Never send money to someone who requests it over the phone. Then talk to trusted family members and friends about the telemarketer’s offer. Call the local Better Business Bureau or state licensing agency to verify the telemarketing company. Call the Attorney General’s Charity Registry to verify a charitable organization. Get on the National Do Not Call registry by contacting the Federal Trade Commission. Home improvement scams involve people offering to do work on an individual’s home, and then charging extremely high prices, doing shoddy work, or not finishing the job at all. Often these scammers claim to be contractors with leftover materials from another job and say that fixing the person’s roof would be very cheap. To avoid these scams, always obtain at least two other bids from reputable contractors and contact references before hiring someone to work on your home. Check to make sure the contractor is licensed and no complaints are filed. In addition, be sure to get everything in writing regarding exactly what the contractor will do and how much it will cost. Home equity scams involve someone trying to trick individuals into borrowing more money than they can afford to repay and then taking their homes when they default on telemarketing scams, home improvement scams, home equity fraud (predatory lending), estate-planning scams, and identity theft. Telemarketing scams involve someone who claims to be an employee of a company or charity and who calls to offer a chance of winning a prize or to solicit funds for a worthy cause. Some scams involve the telemarketer wanting to sell something right away at a discount, explaining that money must be sent that same day. Other telemarketing scams involve offering loans at extremely low interest rates. To protect against telemarketing fraud, individuals should never send money to someone who requests it over the phone. 9 Detecting and Reporting Elder Abuse and Neglect 66 the loan. To avoid these scams, homeowners should be wary of any lender who offers a loan based on their home’s equity instead of their income, because they may not be able to make the monthly payments. Be wary as well of lenders who change terms at the last minute, pressuring homeowners to sign right away, repeatedly trying to refinance the loan, adding credit insurance to the loan, or not explaining all of the loan terms. Individuals who think they’ve been a victim of home equity fraud should contact a legal aid organization, such as Bet Tzedek Legal Services, or the Federal Trade Commission. Estate planning scams involve people posing as estate planning experts who offer to create a revocable living trust. These salespeople often aren’t lawyers and aren’t authorized to create trusts or practice as an estate planner. Many estate-planning scammers try to sell annuities, using a person’s savings, to become eligible for MediCal. These “trust-mill scams” should be reported to the local District Attorney’s office or the California Department of Insurance. Identity theft is a growing problem throughout the United States and can have drastic effects on finances and credit rating. Identity thieves steal bank account numbers, Social Security numbers, credit card numbers, and other personal information to obtain access to an individual’s cash and credit. To avoid identity theft, individuals should always shred or tear up mail and other papers containing personal information before throwing them in the trash. People should never give out personal information to unsolicited callers, even if they claim to be from the person’s bank or credit card company. Reputable companies don’t call their customers asking for such information. Individuals who think they’ve been a victim of identity theft should immediately contact the credit agencies and ask them to put a fraud alert on the credit report. If unauthorized activity is noted on a bank account or credit card, those companies should be notified immediately to put a fraud alert on those accounts. A complaint may also be filed with the Federal Trade Commission, which uses an Identity Theft Affidavit to notify all businesses where the defrauded individual has an account. Individuals may request a free credit report by calling the Annual Credit Report Request Service at (877) 322-8228. CREDIT AGENCIES ! Here’s a handy list of agencies that provide fraud alerts and credit reports. You might wish to clip this box and keep it in a handy place. Identity thieves steal bank account, Social Security, and credit card numbers to obtain access to an individual’s cash and credit. 67 Agency Fraud Alerts Credit Reports Equifax (800) 525-6285 (800) 685-1111 Experian (888) 397-3742 (888) 397-3742 Trans Union (800) 680-7289 (800) 916-8800 9 Detecting and Reporting Elder Abuse and Neglect Resources For more information on topics in this chapter, consult the following resources. Agencies • Adult Protective Services: Los Angeles County Community and Senior Services, (877) 477-3646 (hotline); (626) 579-6905 (direct); http://dcss.co.la.ca.us/APS/APS.htm • Attorney General’s Charity Registry: (916) 445-9555, http://ag.ca.gov/charities • Bet Tzedek Legal Services: 145 South Fairfax Avenue, Suite 200, Los Angeles, (323) 939-0506; 12821 Victory Boulevard, North Hollywood, (818) 769-0136; www.bettzedek.org • California Attorney General’s Office: (800) 952-5225; for telemarketing and mail fraud • California Department of Consumer Affairs: (800) 952-5210; for license checks and consumer complaints • California Department of Insurance: (800) 927-HELP (4357), www.insurance.ca.gov • California Superior Court: www.courtinfo.ca.gov/selfhelp/; for help filing a TRO • Contractors State Licensing Board: (800) 321-CSLB (2752), www.cslb.ca.gov/consumers/ • Federal Trade Commission: (877) 438-4338 for identity theft and list of new scams or (877) 382-4357 for consumer information and complaints; www.ftc.gov/ • Long-Term Care Ombudsman Program Crisis Line: (800) 231-4024 to report abuse at a facility • National Do Not Call registry: (888) 382-1222, www.ftc.gov/ • National Fraud Information Center: (800) 876-7060, www.fraud.org/ • State Attorney’s Task Force on Elder Abuse: (800) 952-5225 to report suspected abuse or financial scams; or (800) 722-0432 to report Medi-Cal provider fraud or elder abuse in long-term facility • State Bar of California: (866) 44-CA-LAW (22-529) Print resources • A Citizen’s Guide to Preventing and Reporting Elder Abuse: (916) 324-7863 or www.ag.ca.gov • Legal Citations Elder Abuse and Dependent Adult Civil Protection Act (EDACPA), Welfare and Institutions Code sections 15600 et seq 9 Detecting and Reporting Elder Abuse and Neglect 68 SUPPORTING THE CAREGIVER 69 10 SUPPORTING THE CAREGIVER Caring for a loved one can be rewarding for both the caregiver and elder or dependent adult. However, caregiving can also be physically and emotionally exhausting as well. Caregivers may feel anger, resentment, depression, exhaustion, and isolation. The keys to successful caregiving include staying healthy, maintaining autonomy and privacy, and having support from family and friends. This chapter discusses how to obtain support for caregivers, how caregivers can remain healthy, and how to make a transition from home to an assisted living facility or nursing home. FAMILY AND FRIENDS Caregivers and the people they care for need the support of family and friends. One of the first steps any caregiver should take is to arrange a meeting with all family members and friends willing and able to participate in caregiving. The caregiver and loved one should take inventory of the kinds of help required and which friends and family members can best provide it. That help may include sharing caregiving duties or providing financial support, equipment, or certain skills. Caregivers must avoid isolating themselves and the loved one they care for. Support from family and friends can drastically reduce the level of physical, emotional, and financial stress on the caregiver and their loved one. Some people may want to seek the advice and support of their clergy or congregation. 10 Supporting the Caregiver Some people may want to seek the advice and support of their clergy or congregation. SUPPORT GROUPS In support groups, caregivers can learn more about caregiving, share strategies, resources, and learn how to deal with stress. Support groups are offered through a variety of agencies and organizations devoted to caregiving for seniors and dependent adults. Support groups are conducted in many languages and are also available on the internet. California has many Caregiver Resource Centers that serve countywide areas. These centers focus on individuals with brain impairments, such as Alzheimer’s disease, 70 illness, lack of sleep, anxiety, isolation, high levels of stress, depression, alcoholism, or drug abuse. Caregivers who have learned coping and management skills tend to feel less stressed. In addition, those who have family and friends who visit and help out tend to feel less anxiety, isolation, and depression. stroke, Parkinson’s disease, and brain injuries resulting from an accident. The Alzheimer’s Association, hospitals, adult day care centers, and senior centers also offer support groups. CAREGIVER HEALTH Caregiving is often associated with health problems, including stress and depression. Although caring for a loved one doesn’t cause health problems itself, caregivers often feel stressed and neglect their own health to take care of a loved one. That can lead to frequent Caregivers who have learned coping and management skills tend to feel less stressed. CAREGIVER TIPS FOR REDUCING STRESS reducing stress. If you’re a caregiver, here are five steps you can take to help reduce the stress of caring for a loved one. • Ask for support, and when offered, accept it. Talking to family and friends about caregiving is important. Take time to socialize and talk about other things. • Learn as much as possible about your loved one’s illness. Knowing about the illness helps you manage your loved one’s care better because you’ll be more aware of what happens during the illness and why. • Set aside time to relax, have fun, and get away from caregiving. Remember that wanting time for yourself or time away from the caregiving situation doesn’t mean that you’re a poor caregiver. Time away from caregiving helps you stay healthy and happy. It also allows your loved one time to have a break too. • Use respite care as often as possible to take a break from caregiving duties. Adult day care provides an opportunity for a loved one to visit with peers. Your loved one can attend an adult day care center for activities during the day. Or have friends and family visit with your loved one while you take a break outside of the home. Respite care services can also be used for a few days to allow time for the caregiver to visit other family or take a short vacation. • Take care of yourself physically. Adequate sleep, exercise, and healthful eating are all essential for maintaining energy, warding off illnesses, and 71 10 Supporting the Caregiver or an ill immediate family member (spouse, parent, or child). FMLA applies to all public agencies (federal, state, and local) and private companies with at least 50 employees. The family member being cared for must have a serious medical condition, and the employee must have worked at the agency or company for at least one year. The Family and Medical Leave Act requires employers to grant up to 12 weeks of unpaid leave to an employee who has to care for a new child or an ill immediate family member. After the 12 weeks are over, the employee is guaranteed to return to his old job or to a different job at the same level and pay scale. Because FMLA is a federal law, the term spouse doesn’t include registered domestic partners. The State of California’s family leave law, however, does include registered domestic partners and offers benefits similar to those of the FMLA. LAWS AND POLICIES THAT HELP CAREGIVERS Paid Family Leave Program Caregivers are often working full-time jobs when the need for caregiving arises. Federal and state laws, and now workplace policies, help caregivers navigate work and caregiving issues. Here’s a look at some of those laws and policies. California’s Paid Family Leave Program pays workers up to 6 weeks of partial pay a year when taking time off from work to care for a new child or ill family member. Most people receive just over half (55%) of their usual pay, up to a maximum $840 per week, while on leave. The program is part of the State Disability Insurance (SDI) program, and the benefits are paid entirely by employees through payroll deductions. The program pays benefits to the Family and Medical Leave Act The Family and Medical Leave Act (FMLA) is a federal law requiring employers to grant up to 12 weeks of unpaid leave to an employee who has to care for a new child 10 Supporting the Caregiver 72 caregiver while she takes family leave to care for an ill spouse, domestic partner, child, or parent. It also pays benefits for leave due to a newborn child or new adoptive or foster child. When people decide to care for a loved one, they should investigate employment laws and rights that apply to caregivers, as well as their own employer’s benefits and policies. Caregivers should make a list of important issues to discuss with their employer and try to negotiate changes in their workload or schedule, where appropriate. They should also request access to any caregiving benefits the employer provides. Tax Deductions Caregivers who pay for loved one’s bills and expenses may be eligible for tax deductions for caregiving. These bills can include nursing home costs, doctor visits, caregiver expenses and transportation. Consult a tax professional for advice on these issues. TRANSITIONS TO OTHER PLACEMENT Sometimes families decide that caregiving at home is no longer an option. The current caregiving situation may become unmanageable for the caregiver, loved one, and family. Making a decision to stop caregiving in the home can be difficult, but it may help prevent further problems. California Property Tax Postponement Program California’s Property Tax Postponement program allows caregivers to postpone paying some or all property taxes until they move from the home, sell the home, or die. To be eligible, a caregiver must be 62 or older, blind or disabled, and have an income below $24,000 per year. Individuals must also own and occupy the property as their principal place of residence. The State Controller’s office handles all claims for property tax postponement. Common reasons to make the transition from home to an assisted living center or nursing home include caregiver burnout, safety of the caregiver or loved one, and unavailability of a caregiver. Making a decision to stop caregiving in the home can be difficult, but it may help prevent further problems. Flexible workplace policies Flexible workplace policies are becoming more popular among employers and employees. Flexible time allows workers to modify typical work day hours or work from home. Some workplaces also offer on-site support groups and adult day care, leaves of absence, and flexible spending accounts. Flexible time policies can provide muchneeded support for caregivers. Placement Options There are several placement options depending on the level of care the loved one needs, including senior housing, retirement communities, assisted living facilities and skilled nursing facilities. Let’s look at them one by one. 73 10 Supporting the Caregiver have full-time nurses and doctors available to oversee care. Nursing homes in California charge between $3500 and $6000 monthly. Medicare pays for shortterm (100 days or less) nursing home stays for patients requiring skilled nursing care. Long Term Care Medi-Cal pays for long-term stays in nursing homes. Long term care insurance may also pay for long-term nursing home stays. Nursing homes also accept private pay patients. Due to the high cost of nursing homes, many people in nursing homes receive Long Term Care Medi-Cal. • Independent retirement communities and senior housing may offer individual units with group meals and social activities. Non-profit groups and the Housing and Urban Development (HUD) Authority operate senior housing. Rent is calculated on a sliding scale, based on the senior’s income. Senior housing buildings also provide housing to disabled persons under age 65. • Assisted living facilities provide independent living environments with supervision and non-medical care. These facilities may be referred to as rest homes, retirement homes, or board-and-care homes. They’re usually private pay only, with prices ranging from $1000 to $5000 per month. Some long-term care insurance policies reimburse for assisted living. A limited number of facilities accept persons who receive Supplemental Security Income (SSI). See Chapter 3, Financial Strategies to Pay for Home Care, page 22, for more information on SSI. Assisted living facilities provide independent living environments with supervision and non-medical care. Both assisted living facilities and nursing homes must be licensed by the State of California. For more information on these care facilities, order a copy of Bet Tzedek’s guides “Assisted Living Companion” and “Nursing Home Companion” by calling (323) 939-0506 or online at www.bettzedek.org. • Skilled nursing homes provide medical and nursing care, custodial care, and 24-hour supervision for residents in a medical setting. Skilled nursing homes 10 Supporting the Caregiver 74 Resources For more information on topics in this chapter, consult the following resources. Agencies • California Advocates for Nursing Home Reform: (800) 474-1116; www.canhr.org • California Paid Family Leave Program: (877) BE-THERE (23-84373) • California Property Tax Postponement at State Controller’s Office: (800) 952-5661, www.sco.ca.gov/col/taxinfo • California State Franchise Tax Board: (800) 852-5711 • Employment Development Department, for information on state disability insurance: (800) 480-3287 Print resources • Assisted Living Companion and Nursing Home Companion, Bet Tzedek, (323) 549-5897, www.bettzedek.org Caregiver support • Alzheimer’s Association: support groups at www.alz.org; (800) 272-3900 Help line • Family Caregiver Alliance, National Center on Caregiving: online support groups at www.caregiver.org • Los Angeles Caregiver Resource Center: 3715 McClintock Avenue, Los Angeles, CA 90089-0191; (800) 540-4442; http://geroweb.usc.edu/lacrc • National Family Caregivers Association: (800) 896-3650, www.nfcacares.org • California Coalition for Caregivers (advocacy group) (866) 448-3615 75 10 Supporting the Caregiver APPENDICES 77 APPENDIX A: GLOSSARY Adult Day Care Center: a facility that Alzheimer’s Day Care Resource Center: a facility that specializes in provides social and recreational activities and sometimes basic medical care for the elderly and disabled. programs for persons with Alzheimer’s disease or a related dementia and are equipped to handle people who wander, are incontinent or aggressive. Adult Day Treatment Center: a facility that provides social, recreational, and basic medical and psychiatric care for people with psychological or psychiatric problems. Area Agency on Aging (AAA): an agency that coordinates a wide array of services to seniors and adults with disabilities at the community level and serves as the focal point for local aging concerns. Adult Protective Services (APS): a state agency that investigates and protects elders and dependent adults from abuse in private homes, hospitals, and health care facilities. Assets: the entire property owned by a person; can include cash, stock, inventories, property rights, and insurance policies. Advanced Health Care Directive: a legal document that allows individuals to express their wishes about their future health care. Attorney-in-Fact: an agent who, through a power of attorney, acts on behalf of a patient and is legally allowed to make decisions for that person. Against Medical Advice: a form signed by a patient that acknowledges that he or she has decided to be discharged even though the person has been told that doing so may cause mental or physical harm. Bond: a type of insurance policy that compensates the consumer for theft or loss. Caregiver Resource Center: an organization that provides support, information, and education to individuals providing care to adults with brain impairments due to disease or injury. Aid Paid Pending: a term used to indicate that Medi-Cal benefits continue to be paid until the person receives a state hearing. Caregiver: an individual who cares for a disabled, ill, or elderly person. Can be family, a friend or a paid worker. Alzheimer’s Association Safe Return Program: a nationwide identification system designed to assist in the safe return of people who are cognitively impaired and who become lost after wandering away. Glossary 78 Conservatorship: the process through which a judge appoints a conservator to make legal, financial, and/or health care decisions for a conservatee. Cash Assistance Program for Immigrants (CAPI): a state program that provides cash assistance to aged, blind, or disabled immigrants with legal resident status and low income. Conservatorship Over the Estate: Chore Worker: an individual who a type of conservatorship that allows a conservator to manage financial and legal matters for a conservatee. provides basic housekeeping services, such as cleaning, cooking, and driving for the elderly or disabled. Conservatorship Over the Person: a type of conservatorship that Codicil: an amendment added to an existing will. allows a conservator to manage the conservatee’s personal care, such as where the person lives, and health care decisions. Community Medi-Cal: a type of Medi- Cal insurance designed to help those who live in the community, either in their own home, with family, in an assisted-living or boardand-care facility. Curative Health Care: medical care designed to cure or alleviate disease. Dependent Adult: a person aged 18 to Community Registry: a list of private home care workers looking for employment; usually maintained by home care agencies or senior centers. 64 who has a physical or mental disability that restricts the ability to protect his or her rights or to perform regular daily activities. Conservatee: a person whom a judge Durable Power of Attorney for Finances: a document that allows an has decided is unable to handle his own affairs and for whom a conservator has been appointed. individual to appoint a trusted relative or friend, who can then manage the individual’s finances immediately or at some future time. Conservator: a person appointed by the court to manage the affairs of an individual who is not capable of managing his own affairs. 79 Glossary Fast-Track Appeals: a type of Elder and Dependent Adult Civil Protection Act: a California state law Medicare appeal designed for people whose health will be seriously injured if they don’t receive requested medical treatment or for individuals receiving services from a skilled nursing facility, home health agency, or outpatient rehabilitation facility. that allows elders, dependent adults, and their conservators to sue abusers for physical and emotional abuse, neglect or financial abuse. Emergency Do Not Resuscitate Order: a form that instructs paramedics or Fiduciary Duty: a responsibility of an other emergency medical services (EMS) personnel to withhold emergency resuscitation. agent to use utmost care in handling money for an incapacitated person and acting in that person’s best interest. Emotional Abuse: a form of abuse that File of Life Card: a card that lists important medical information for quick reference in an emergency. Paramedics are trained to look for this card on the refrigerator. includes verbal abuse, infliction of emotional distress, confinement, or refusal of emotional support. Employee Assistance Programs: programs offered by some workplaces to assist employees who are caregivers or patients; may include counseling, legal services, information and referrals. Financial Abuse: a theft or embezzlement of money or property from an elder or dependent adult. Equity: the difference between the amount Flexible Time: a work program that a person’s house is worth and the amount the person owes for the house. allows workers to modify typical workday hours or work locations. Estate: all personal property, real estate, money, stocks, and any other property owned by a person at the time of death. Geriatric Assessment: a comprehensive evaluation performed by a multidisciplinary team used to develop a care plan for therapy and long term follow up. Executor: a individual named in a will to oversee the distribution of property and follow other directions in the will. Geriatric Care Manager: a professional with a specialized focus on aging and elder care. They assist older adults and their families in designing plans of care to maximize independence and well being of the older adult. Family and Medical Leave Act (FMLA): a federal law requiring certain employers to grant up to 12 weeks of unpaid leave to an employee who needs to care for a new child or an ill family member. Glossary 80 Geriatrician: a doctor who specializes HUD (U.S. Department of Housing and Urban Development): a federal in the medical needs of older adults. A geriatrician is an expert in dealing with multiple medical problems and chronic illnesses. program whose mission is to increase homeownership, support community development and increase access to affordable housing free from discrimination. Grantor: a person who creates a trust. Identity Theft Affidavit: a form Handwritten Will: a legally valid will developed by the Federal Trade Commission that can be used to report identity theft to financial institutions. that has been written entirely by hand and dated and signed by the person making the will. No witnesses are required. Also called a holographic will. Identity Theft: the theft of Social Security numbers, credit card numbers, or of other personal information to obtain access to an individual’s cash or credit. Handyworker Program: a program that offers free home repairs to low-income seniors and disabled persons living in the City of Los Angeles. Incapacity: the lack of mental functioning to understand one’s condition and the inability to make informed decisions about one’s own personal care, property or finances. Health Maintenance Organization (HMO): a managed care health plan that requires patients to see a doctor within a contracted HMO network. In-Home Supportive Services (IHSS): a state benefit that provides home handwritten will. care to individuals who live at home and need help with some daily activities, such as bathing, dressing, toileting, or housecleaning. Home Secure: a program that offers free home assessment and home modifications to low-income seniors and disabled persons living in the City of Los Angeles. Integrated Care Management Program (ICMP): a state benefit that Holographic Will: another name for a provides care managers for elderly or disabled persons to help them through times of crises, regardless of income. Hospice: a program that provides comfort care for terminally ill patients in a health care facility or the patient’s home. Intestate Succession: the distribution of an estate to a deceased person’s next of kin in accordance with state inheritance laws, used when no will exists. 81 Glossary Irrevocable Living Trust: a trust Medicare: a federal government created while a person is living and has the ability to make decisions about property and money and that cannot be changed or revoked. sponsored health insurance program, generally reserved for the elderly and disabled. Medicare Summary Notice: Liquid Assets: property that can be readily converted to cash, such as bank accounts, stocks, and certain investments. a Medicare document used to explain the reason for benefits provided or denied and details how to appeal the decision. Litigation: a court process in which judges Medigap Policy: a private health and juries make decisions under state or federal law. insurance policy designed to supplement Medicare coverage. Long Term Care Medi-Cal: an Multi-Purpose Senior Services Program (MSSP): a program that insurance program in California that pays for care in a nursing home. provides social and health care management for frail, elderly persons who wish to live at home instead of a nursing home. Mandatory Reporter: an individual required by state law to report suspected abuse; includes doctors, nurses, social workers, and other health care professionals; clergy, with some exceptions; employees of health care facilities; bank employees; and anyone who assumes the care or custody of an elder or dependent adult. Neglect: Failure to adequately assist an elder or dependent adult with personal hygiene, or to provide food, clothing, shelter or needed medical care. Notice of Action: a letter sent by MediCal informing the recipient of a change in benefits and explaining appeal rights. Mediation: a form of informal problem resolution. PACE: Program of All-Inclusive Care for Medi-Cal: a California state insurance the Elderly. A Medi-Cal program which provides comprehensive care for older adults who require nursing home care but wish to stay at home. program that provides vital health and longterm care coverage for low-income children, their parents, elderly, and disabled Californians. Glossary 82 Paid Family Leave Program: Probate: a court process in which a a California program that pays workers up to 6 weeks of partial pay a year when taking time off from work to care for a new child or ill family member. person’s will is reviewed for its validity, creditors are paid, and the balance of assets are distributed to heirs. Property Tax Postponement: Palliative Care: comfort care provided a state program that allows low-income individuals to postpone paying some or all of their property taxes until they move, sell the home, or die. to a terminally ill individual. Payable on Death Beneficiary: a bank account designation which transfers assets on death to a designated beneficiary. Does not go through the probate process. of law. Protective Supervision: an IHSS benefit to protect individuals who have mental impairments and who need to be watched 24 hours a day, to ensure their safety. Physical Abuse: physical or sexual Representative Payee: a person assault, unreasonable physical restraint, prolonged deprivation of food and water (unrelated to end-of-life health care decisions), or the use of unauthorized or inappropriate medication to subdue or alter a person’s emotional state. authorized to manage Social Security, Supplemental Security Income (SSI) or Veteran’s Administration checks for another individual. Petition: to make a request of a court Request for Hearing: a form used to appeal a Medi-Cal decision. Power of Attorney for Health Care and Health Care Instruction: a form in which a person Respite Care: refers to temporary relief for caregivers caring for someone who is ill, injured or frail. Respite care can be provided in an adult day care center, the home, or other settings. appoints an agent to make health care decisions should the person become incapacitated. Principal: the person who creates a power of attorney and names an agent. Reverse Mortgage: a type of home loan the borrower does not have to repay as long as she lives in the home. Private Home Care Agency: an Revocable Living Trust: a trust agency that provides home care workers at an hourly rate. created while a person is still living and has the ability to make decisions about property and money. Can be revoked or changed prior to a person’s death or incapacity. 83 Glossary Right of Survivorship: ownership Supplemental Security Income (SSI): a federal Social Security program rights in joint tenancy property in which the survivor owns the entire account or property on the death of the joint owner. Does not go through probate. that gives additional income to seniors and disabled people who live below the poverty line. Self-Neglect: a person who endangers Support Group: a group of people, himself by failing to adequately care for himself. sometimes led by a therapist, who provide each other with moral support, information, and advice on problems relating a shared experience, such as caregiving. Senior Center: a community center that provides activities, meals, limited health monitoring, transportation, and social services to seniors. Testamentary Trust: a trust created through a will which must go through the probate process. Skilled Care: health care provided by a professional, such as a doctor, nurse, therapist, social worker, or counselor. Testator: an individual who creates a will. Trust: a legal entity that holds property. Special Needs Trust: a type of trust in which a trustee has complete control over the distribution of trust income and the beneficiary has no control. Commonly used for developmentally disabled individuals receiving SSI or Medi-Cal. Trustee: an individual who manages trust State Disability Insurance: Will: a legally binding document that directs a California state program that provides disabled persons up to one year of partial wages if unable to work due to disability. how a person’s estate will be distributed on death. property for a beneficiary and who holds a duty to the trust and beneficiary to make good business decisions and protect the trust assets. Statutory Will: in California, a simple Worker’s Compensation Insurance: a program that provides “fill in the blanks” will used for people with relatively small estates. medical insurance and disability benefits for people who are injured on the job. Glossary 84 APPENDIX B: MSSP SITES This table, adapted from the California Department of Aging, shows Multipurpose Senior Services Program agencies and contact information, county-by-county. Information can also be obtained by calling the California Department of Aging at (800) 510-2020. County Agency Phone Alameda City of Oakland Department of Human Services (City of Oakland only) City of Fremont Human Services Department (510) 238-3762 (510) 574-2050 Alpine Area 12 Agency on Aging (209) 532-6272 Amador Area 12 Agency on Aging (209) 532-6272 Butte California State University—Chico (530) 898-5082 Calaveras Area 12 Agency on Aging (209) 532-6272 Contra Costa Office on Aging (925) 335-8710 El Dorado Department of Human Services (530) 621-6300 Fresno Fresno-Madera Area Agency on Aging (559) 453-6494 Glenn California State University—Chico (530) 898-5082 Humboldt Humboldt Senior Resource Center (707) 443-9747 Imperial Work Training Center, Inc. (760) 352-6181 Inyo Inyo-Mono Area Agency on Aging (760) 873-6364 Kern Aging and Adult Services (661) 868-1095 Kings Kings-Tulare Area Agency on Aging (559) 730-9921 Lake Community Care Management Corp. (707) 995-7010 Lassen Golden Umbrella (530) 226-3097 Los Angeles City Jewish Family Service of Los Angeles SCAN Independence at Home (323) 937-5930 (562) 492-9878 85 MSSP Sites APPENDIX B: MSSP SITES (continued) County Agency Phone Los Angeles City/County Altamed Health Services Corp. (323) 889-7862 Los Angeles Huntington Hospital Human Services Association Partners in Care Foundation Partners in Care Foundation-South (626) (562) (818) (310) Madera Fresno-Madera Area Agency on Aging (559) 453-6494 Marin Jewish Family and Children Services (415) 491-7960 Mariposa Area 12 Agency on Aging (209) 532-6272 Mendocino Community Care Management Corp.—Ukiah (707) 468-9347 Community Care Management Corp.—Fort Bragg (707) 964-4027 Merced Human Services Agency (209) 385-3000 Modoc Golden Umbrella (530) 226-3097 Mono Inyo-Mono Area Agency on Aging (760) 873-6364 Monterey Department of Social and Employment Services (831) 755-3403 Napa Area Agency on Aging (707) 644-6612 Orange Social Services Agency (714) 825-3000 Orange CalOptima (888) 587-8088 or (714) 246-8400 Placer UC Davis Care Management (916) 734-5432 Riverside Office on Aging (951) 697-4697 Sacramento UC Davis Care Management (916) 734-5432 San Bernardino Aging and Adult Services (909) 891-9019 San Diego Aging and Independent Services (800) 339-4661 or (800) 510-2020 San Francisco Institute on Aging (415) 750-4150 MSSP Sites 86 397-3110 806-5400 526-1780 632-9980 APPENDIX B: MSSP SITES (continued) County Agency Phone San Joaquin Department of Aging (209) 468-2202 San Mateo Department of Health Services (650) 573-3900 Santa Barbara MSSP Unit (805) 346-8385 Santa Clara Council on Aging of Silicon Valley (408) 296-8290 Santa Cruz Human Resources Agency (831) 454-4600 Shasta Golden Umbrella (530) 226-3097 Siskiyou Golden Umbrella (530) 226-3097 Solano Area Agency on Aging (707) 643-5170 Sonoma Area Agency on Aging (707) 565-5970 Stanislaus Department of Social Services (209) 558-2233 Tehama California State University—Chico (530) 898-5082 Trinity Golden Umbrella (530) 226-3097 Tulare Kings-Tulare Area Agency on Aging (559) 730-9921 Tuolumne Area 12 Agency on Aging (209) 532-6272 Ventura Area Agency on Aging (805) 477-7300 Yolo UC Davis Care Management (916) 734-5432 Yuba Health and Human Services (530) 749-6775 87 MSSP Sites APPENDIX C: PACE PROGRAMS Program of All-Inclusive Care for the Elderly (PACE) centers can currently be found only through these agencies. • On Lok Senior Health Services 1333 Bush Street San Francisco, CA 94109 (415) 292-8888 www.onlok.org • Sutter SeniorCare 1234 U Street Sacramento, CA 95818 (916) 446-3100 http://suttermedicalcenter.org/services/senior_seniorcare.html • AltaMed Senior BuenaCare 5425 East Pomona Boulevard Los Angeles, CA 90022 (323) 728-0411 www.altamed.org • Center for Elders’ Independence 1955 San Pablo Avenue Oakland, CA 94612 (510) 433-1150 www.cei.elders.org PACE Programs 88 APPENDIX D: CAREGIVER RESOURCE CENTERS Family Caregiver Alliance Del Oro Caregiver Resource Center Bay Area Caregiver Resource Center Statewide Resources Consultant 180 Montgomery Street Suite 1100 San Francisco, CA 94104 (415) 434-3388 or (800) 445-8106 E-mail: [email protected] Website: www.caregiver.org Counties: Alameda, Contra Costa, Marin, San Francisco, San Mateo, and Santa Clara 5723A Marconi Avenue Carmichael, CA 95608 (916) 971-0893 or (800) 635-0220 (regional) E-mail: [email protected] Website: www.deloro.org Counties: Alpine, Amador, Calaveras, Colusa, El Dorado, Nevada, Place, Sacramento, San Joaquin, Sierra, Sutter, Yolo, and Yuba Inland Caregiver Resource Center 1420 East Cooley Drive Suite 100 Colton, CA 92324 (909) 514-1404 or (800) 675-6694 (CA) E-mail: [email protected] Website: www.inlandcaregivers.com Counties: Inyo, Mono, Riverside, and San Bernardino Coast Caregiver Resource Center 5350 Hollister Avenue Suite C Santa Barbara, CA 93111 (805) 967-0220 or (800) 443-1236 (regional) E-mail: [email protected] Website: www.coastcrc.org Counties: San Luis Obispo, Santa Barbara, and Ventura Los Angeles Caregiver Resource Center 3715 McClintock Avenue Los Angeles, CA 90089 (213) 821-7777 or (800) 540-4442 (CA) E-mail: [email protected] Website: www.losangelescrc.org County: Los Angeles Del Mar Caregiver Resource Center 736 Chestnut Street Suite F Santa Cruz, CA 95060 (831) 459-6639 or (800 624-8304 (regional) E-mail: [email protected] Website: www.hpcn.org/delmar Counties: Monterey, San Benito, and Santa Cruz 89 Caregiver Resource Centers APPENDIX D: CAREGIVER RESOURCE CENTERS (continued) Mountain Caregiver Resource Center Southern Caregiver Resource Center 2491 Carmichael Drive Suite 400 Chico, CA 95928 (530) 898-5925 or (800) 822-0109 (regional) Email: [email protected] Website: www.caregiverresources.org/MCRC_home Counties: Butte, Glenn, Lassen, Modoc, Plumas, Shasta, Siskiyou, Tehama, and Trinity 3675 Ruffin Road Suite 230 San Diego, CA 92123 (858) 268-4432 or (800) 827-1008 (CA) E-mail: [email protected] Website: www.scrc.signonsandiego.com Counties: Imperial and San Diego Valley Caregiver Resource Center 3845 North Clark Street Suite 201 Fresno, CA 93726 (559) 22-9254 or (800) 541-8614 (regional) E-mail: [email protected] Counties: Fresno, Ken, Kings, Madera, Mariposa, Merced, Stanislaus, Tulare and Tuolumne Orange Caregiver Resource Center 251 East Imperial Highway Suite 460 Fullerton, CA 92835 (714) 578-8670 or (800) 543-8312 (CA) E-mail: [email protected] Website: www.caregiveroc.org County: Orange Redwood Caregiver Resource Center 141 Stony Circle Suite 200 Santa Rosa, CA 95401 (707) 542-0282 or (800) 834-1636 (regional) E-mail:[email protected] Counties: Del Norte, Humboldt, Lake, Mendocino, Napa, Solano, and Sonoma Caregiver Resource Centers 90 INDEX Conservatee, 79 Conservator, candidate for, 44, 79 Conservatorship, 43-44, 79 over estate, 54, 79 over the person, 79 as protective measure, 65 vs. advanced health care directives, 44 Credit reports, agencies that provide, 67 A–B Adult day care centers, 4-5, 78 Medi-Cal and, 14 Adult day health care centers, 5 Adult day treatment centers, 5, 78 Adult Protective Services, 64, 78 Advanced health care directives, 40-42, 78 appointing agent for, 41 completing forms for, 42 do-it-yourself, 41 giving agent specific instructions for, 41-42 health care instruction only and, 42 vs. conservatorships, 44 when effect of, begins, 43 Against medical advice, 78 Aid paid pending, 78 Medi-Cal appeal and, 16 Alzheimer’s Association Safe Return Program, 78 Alzheimer’s day care resource centers, 5, 6, 78 Area Agency on Aging, 78 Assisted living facilities, 74 Attorney-drafted will, 51-52 Attorney-in-fact, 78 D Dependent adult, 79 Dependent adult abuse, 62-67 conditions that constitute, 62 protecting dependent adults from, 65-67 reporting, 64 warning signs of, 62-64 Discharge planners, role of, 35 Do Not Resuscitate orders, 42, 43 Durable Power of Attorney for Finances, 48-49, 79 vs. conservatorships over estate, 54 E Elder abuse and neglect, 62-67 conditions that constitute, 62 protecting elders from, 65-67 reporting, 64 warning signs of, 62-64 Elder Abuse Temporary Restraining Orders, 65 Elder and Dependent Adult Civil Protection Act, 65, 80 Emergency alert response systems, 33 Emergency Do Not Resuscitate form, 42, 43, 80 Emotional abuse, 62 signs of, 63 Employee assistance programs, 34, 80 Estate claims, Medi-Cal and, 17 Estate planning, 50-54 Estate planning scams, elders and, 67 Executor, 80 Expenses, reducing, 22 C California Property Tax Postponement Program, 23-24 CAPI, 25, 79 Caregiver, 78 discontinuing home care and, 73-74 education and training for, 33 family and friends as support source for, 70 health problems associated with, 71 law and policies that can help, 72-73 resource center for, 78, 89-90 stress-reducing tips for, 71 support groups for, 70-71 Care managers, role of, 36-37 Cash Assistance Program for Immigrants, 25, 79 Chore workers, 4, 79 Codicil, 79 Community Medi-Cal, 79 Community registry of home care workers, 30 F Family disputes, resolving, 58-59 91 Index INDEX tips for hiring, 29 Home equity line of credit, 22-23 Home equity loan, 22 Home equity scams, elders and, 66-67 Home health agencies, 28 choosing, 29 Home improvement scams, elders and, 66 Home safety precautions, 32 Home sale, 24 Home Secure program, 32, 81 Hospice care, 4, 81 Medi-Cal and, 14 Medicare and, 11 Family Medical Leave Act, 3, 72, 80 Fast-track Medicare appeal, 12, 80 File of Life Card, 33, 80 Financial abuse, 63, 80 signs of, 63-64 Financial decision making, 48-54 Financial documents, organizing, 33, 34 Fraud alerts, agencies that provide, 67 G Geriatric care managers, role of, 36-37, 80 Geriatricians, role of, 35-36, 81 Grants for home care, 22 H Handwritten will, 51, 81 Handyworker Program, 25, 81 Health care decision making, 40-44 informal, 43-44 Health care documents, organizing, 33, 34 Health care instruction, 40, 41, 42, 83 Health maintenance organization, 81 Medicare and, 11 Holographic will, 51, 81 Home care assessing loved one’s needs and, 2-3 average costs of, 10 discontinuing, 73-74 financial strategies to pay for, 22-25 grants for, 22 hospice care and, 4 improving quality of, 32-37 loans for, 22 Medi-Cal and, 13-16 Medicare and, 10-12 as option, 3 providers of, 3-4, 28-30 research studies and, 37 Home care agencies, 28-29 choosing, 29 Home care providers, resolving problems with, 59 Home care workers how to find, 28-30 licensing and certification of, 30 Index I Identity theft, elders and, 67, 81 Independent retirement communities, 74 In-Home Supportive Services, Medi-Cal and, 14, 81 Integrated Care Management Program, 37, 81 Intestate succession, 50, 81 Irrevocable living trust, 53, 82 J–K Joint bank accounts, 49 L Legal decision making, 48-54 Legal planning, considerations for, 48 Legal representation, need for, 60 Lifeline as emergency alert response system, 33 Litigation, problem resolution and, 59-60, 82 Loans for home care, 22 Long term care, Medi-Cal and, 13, 82 Long term care insurance, 17 Loved one assessing needs of, 2-3 home care as option for, 3-4 time off from work to care for, 3 M Managed care, Medicare and, 11 Mandatory reporting of elder abuse, 64, 82 Mediation of family disputes, 59, 82 Medi-Cal, 13, 82 92 INDEX appealing decision of, 16-17 eligibility for, 13 estate claims and, 17 home care services and, 13-16 long term care and, 13 Medicare, 82 appealing decision of, 12 benefits provided by, 10 eligibility for, 10-11 HMOs and, 11 home healh services and, 11 summary notice from, 12, 82 supplementing coverage of, 11-12 Medigap, 11-12, 82 Money management programs, 50 Multi-purpose Senior Services Program, 82 county-by-county contact information for, 85-87 Institutional Deeming Waiver and, 16 Medi-Cal and, 15-16 R Representative payee, 49-50, 83 Request for Hearing, Medi-Cal appeal and, 16 Research studies, home care improvement and, 37 Respite care, 71, 83 Reverse mortgages, 23, 83 Revocable living trust, 53, 83 N Neglect, 62, 82 warning signs of, 62 Non-medical services, 4 Notice of Action, Medi-Cal appeal and, 16, 82 T–U Tax deductions, caregiver and, 73 Telemarketing scams, elders and, 66 Temporary Restraining Orders, 65 Testamentary trust, 53, 84 Trustee, 84 Trusts, 52-53 special needs, 53 types of, 53 S Scams, elders as targets for, 65-67 Self-neglect, 62, 84 Senior centers, 5, 84 Senior housing, 74 Skilled care, 11, 84 Skilled nursing homes, 74 Special needs trust, 53, 84 State disability insurance, 84 Statutory will, 51, 84 Supplemental Security Income, 24-25, 84 P–Q PACE, 16, 82 Paid Family Leave Program, 3, 72-73, 83 Palliative care, 4, 83 Physical abuse, 62, 83 warning signs of, 62 Placement options, 73-74 Power of attorney for health care, 40, 41, 83 Primary care physicians, role of, 34-35 Private home care workers, 4, 29, 83 Probate, 50, 83 property not covered by, 52 Program of All-Inclusive Care for the Elderly, 16, 82 contact agencies for, 88 Property Tax Postponement Program, 73, 83 Protection of elders by court, 65-67 Public benefits, eligibility for, 24 V Veteran’s benefits, 18, 25 W–Z Waiver programs, Medi-Cal and, 14-15, 16 Wills, 51-52, 84 property not covered by, 52 types of, 51-52 Worker’s compensation, 17-18, 84 Workplace policies, 73 93 Index OUR MISSION Bet Tzedek, The House of Justice, provides free legal assistance to thousands of people who would otherwise be denied access to the legal system underpinning our democracy. Bet Tzedek was founded in 1974 by a few individuals who sought to act upon a central tenet of Jewish law and tradition, which appears in the Bible: “Tzedek, tzedek tirdof—Justice, justice you shall pursue.” This doctrine decrees that it is the duty of all men and women to advocate the just causes of the poor and helpless. Although Bet Tzedek remains intent on ensuring that the legal needs of the Jewish poor are met, we recognize that it is our duty to serve the entire community. For this reason, Bet Tzedek has always provided assistance to all eligible needy residents of Los Angeles County, regardless of their racial, religious or ethnic background. Indeed, at The House of Justice, we believe that all of the groups in our wonderfully diverse society are strengthened when bridges are built that bring us together in a common, just cause. For the people who are Bet Tzedek—the lawyers and non-lawyers, staff members and volunteers, contributors and clients—our mission, therefore, is to pursue equal justice for all. 94 The Caregiver Companion A User-Friendly Guide to Providing At-Home Care Bet Tzedek gratefully acknowledges the City of Los Angeles Department of Aging for funding this publication. Bet Tzedek is an agency of the United Way and of the Jewish Federation of Greater Los Angeles Non-Profit Org. U.S. Postage PAID Los Angeles, CA Permit No. 35915 145 South Fairfax Ave. Suite 200 Los Angeles, CA 90036-2166 www.bettzedek.org